I feel like I am a set of nicad batteries. Each night I go to bed to plug in and recharge. In the morning, I wake up, my batteries fully charged ready to power me through the day. But, just like those old nicads, with each recharge, the amount of energy my set packs each morning is decreasing. And, just like the cordless gadgets that run off those batteries, I'm running shorter with each recharge.
My nicads are pretty worn now. I'm not sure what my charge level is, but by my SWAG method (Scientific Wild Ass Guess), I'd estimate I pack a maximum charge of around 30%. I am still doing okay but energy management is something I have to consciously think about each day. With each drop in charge, I have to make another cut in what I do to conserve energy. Gone long ago, were the high energy activities around the house such as moving compost, rototilling and cleaning the garage. Now, it's the simpler tasks like shopping at Costco, going for a leisurely walk or a night out after work.
At work, my managers and coworkers have been fantastic, I am really blessed to be supported by such a wonderful group of people. They do everything possible to accommodate my muscle weakness so I can continue to work. Unfortunately, despite all their help, work is becoming more difficult. It's not the muscle weakness, my colleagues have seen to that. It's the fatigue. I often worked 60 hour workweeks, sometimes 70 hours - something we do willingly to provide for the family - but now 40 hours is a struggle. By the end of the workweek I'm totally spent and it takes one to two days of complete rest to recover.
Losing energy is one of the hidden facets of Al that one rarely sees. It is not visible as the weakness but I am finding out that it is just as, perhaps more, disabling as the muscle weakness. Dr C. forewarned me about this long ago and now it is becoming a reality. Much of what restricts me is the lack of enough energy not the muscle weakness. It is a one-two punch that is proving to be a difficult obstacle to overcome.
This one is a tough one to swallow and I guess if I dwelt on it, I could get depressed. Subconsciously, I understand this and although the world that I can physically interact with is continually contracting around me, I still choose to focus on what I can do. As I stated before, much of my journey, and life in general, is a matter of perspective. We can focus on our wants and cry, or savor our gifts and give thanks. Life is good. Yes, it is still very good. Please remember this, give thanks; it is such a precious gift.
Saturday, December 17, 2011
Tuesday, December 6, 2011
Another Visit With Dr C.
We had another visit with Dr C and Linda the social worker today. An appointment at the medical office this time - drat! I was beginning to look forward to those lunch meetings, instead. Anyways, we sat and chatted, the four of us, for what seemed like an hour. Of course they touched upon all the pertinent questions of how we were doing and what was changing physically for me. But, I had a nice time with plenty of laughs and joking around, all that was missing was a cafe table, drinks and a waiter. It is so ironic that we go to these palliative care appointments and I have such a good time.
I do have a bit of good news to share but I do have to temper it afterwards; at the conclusion of our meeting, Dr C shared that I was doing very well and the progression has been slower than he expected. Wonderful news, the first bit of positive news regarding the disease since the diagnosis 10 months ago. Much as we enjoyed hearing this, however, Kathy and I are cautious. As I mentioned previously, I present well: I smile, stand straight, speak clearly and move about normally. I fool most and I wonder if I may have tricked Dr C a bit. Because, inside I feel the decline and it has been steady, more than my exterior reveals.
That said, it is good news because it is a reminder of how well I am doing. Back in spring I was expecting to be in a wheelchair by now. I was wondering then if I was going to make it to the Baja mission. Making it to the opening of the hospital this Dec 1 was also doubtful back then. So, all in all, although I am much weaker now there is much to celebrate; I am doing much better than I ever dared to imagine.
Thank you all for your prayers - God hears you; I am humbled by your love, thoughts and support. I am ever so grateful.
I do have a bit of good news to share but I do have to temper it afterwards; at the conclusion of our meeting, Dr C shared that I was doing very well and the progression has been slower than he expected. Wonderful news, the first bit of positive news regarding the disease since the diagnosis 10 months ago. Much as we enjoyed hearing this, however, Kathy and I are cautious. As I mentioned previously, I present well: I smile, stand straight, speak clearly and move about normally. I fool most and I wonder if I may have tricked Dr C a bit. Because, inside I feel the decline and it has been steady, more than my exterior reveals.
That said, it is good news because it is a reminder of how well I am doing. Back in spring I was expecting to be in a wheelchair by now. I was wondering then if I was going to make it to the Baja mission. Making it to the opening of the hospital this Dec 1 was also doubtful back then. So, all in all, although I am much weaker now there is much to celebrate; I am doing much better than I ever dared to imagine.
Thank you all for your prayers - God hears you; I am humbled by your love, thoughts and support. I am ever so grateful.
Wednesday, November 23, 2011
Puzzlement
A few days ago, I was shopping at Bereans, a Christian store. As I walked around the gift section, I happened to see a cross shaped porcelain statuette about 10 inches high. On the front was an inscription that caught me by surprise.
The verse was from Jeremiah 29:11,
"For I know the plans I have for you," declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."
Uh, okay..... prosper? Hmmm..... no harm? Ummm..... a future? .... hope?
My immediate reaction was to look away. A normal response to escape something unpleasant. This verse stung, a taunt to remind me what this disease will be deny me. And, deep inside, I also feared how this blow - a biblical promise that would not be kept - would impact my faith.
Unexpectedly, almost as quickly as I began to turn away, I stopped and turned back to view this verse again. Why, I did this, I couldn't tell you; I still don't know why. But, I stepped closer and leaned in and read the verse again, then again, carefully and slowly.
"For I know the plans I have for you," declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."
As I read..... pondered the words..... my fears began to evaporate. My faith was not faltering as feared, instead it was there, stronger than I realized, reassuring me God would be there. I began to see that this was not a promise denied but rather a promise yet to be understood. Now, more puzzled than hurt, I began to ask:"Well... okay God, then what is your plan for me?"; "In what way will I prosper?"; "If I die, what is it more important that you are protecting?"; "What is my real hope and future?"
I didn't get my answer there from God and I don't know what the answers are yet but, I have marked the verse; it is his promise to me. I claim it.
Okay God, ball is in you court..... I'm waiting.
The verse was from Jeremiah 29:11,
"For I know the plans I have for you," declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."
Uh, okay..... prosper? Hmmm..... no harm? Ummm..... a future? .... hope?
My immediate reaction was to look away. A normal response to escape something unpleasant. This verse stung, a taunt to remind me what this disease will be deny me. And, deep inside, I also feared how this blow - a biblical promise that would not be kept - would impact my faith.
Unexpectedly, almost as quickly as I began to turn away, I stopped and turned back to view this verse again. Why, I did this, I couldn't tell you; I still don't know why. But, I stepped closer and leaned in and read the verse again, then again, carefully and slowly.
"For I know the plans I have for you," declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."
As I read..... pondered the words..... my fears began to evaporate. My faith was not faltering as feared, instead it was there, stronger than I realized, reassuring me God would be there. I began to see that this was not a promise denied but rather a promise yet to be understood. Now, more puzzled than hurt, I began to ask:"Well... okay God, then what is your plan for me?"; "In what way will I prosper?"; "If I die, what is it more important that you are protecting?"; "What is my real hope and future?"
I didn't get my answer there from God and I don't know what the answers are yet but, I have marked the verse; it is his promise to me. I claim it.
Okay God, ball is in you court..... I'm waiting.
Saturday, November 12, 2011
Well, I'm back... again. Much has happened physically, mentally and spiritually. I didn't think I had much worthwhile to share I am beginning to see scattered signs that this journal, sharing with you the path I have chosen and my experiences with Al is what God wants me to do. I'm far from saying that this is definitely where He is calling me but I will continue to meditate and pray about it and hopefully I will see the path once again that He is laying for me.
Al continues to extract his toll, yet because I can walk and move about without any apparent difficulties, to the casual observer, I still appear to be doing well. But, much has changed now, my hands and arms are now quite weak. Many simple mindless tasks, retrieving a snack, opening a ziplock, unlocking a door... carrying 3 items simultaneously, now require thought and effort. Sitting here typing this journal is a challenge; some fingers are reluctant to respond, my forearms and back tire easily. I will type these updates out but it will take much more time and effort.
As I mentioned in a prior entry, as I lost function, I would devise new strategies to maintain my functionality. With my arms, I can no longer do that, I have reached the point where I no longer have enough reserves to compensate for the deficits that Al inflicts upon me. But, this is where I give God praise for Kathy; without her, this portion of the journey would be difficult. Kathy has quietly, seamlessly, almost on cue, stepped in to fill the increasingly number of gaps in what I can do. She has a sixth sense about it, often assuming new roles of help, often before I realize I need it. She does this quietly and efficiently, always there, always ready, sparing my fragile ego the bruise of the need to ask for help. She lifts me up and carries me when I most need it; she is my Joan of Arc in shining armor.
Our marriage is much stronger now. We are closer... much closer. This is what I consider is a collateral benefit of Al. We know that our time together here is finite so we talk, we share, we laugh, we cry, we savor our moments together. Simple times: cuddling and hugs before sleep, saying goodbye when leaving for work, a quick hug and a kiss are special. We enjoy them, remember them, because soon, they will only be a memory. Fights are a rarity; in light of Al, differences are stupid and inconsequential. Gone are all the complexities, Al has stripped away all the worldly, materialistic distractions and has left us with a simple relationship of love expressed continually in preeminent commitment, care and support of each other. Our marriage is good, the best it has ever been, better than I ever imagined. And, the irony of it all, I don't think this would have happened without Al.
Al continues to extract his toll, yet because I can walk and move about without any apparent difficulties, to the casual observer, I still appear to be doing well. But, much has changed now, my hands and arms are now quite weak. Many simple mindless tasks, retrieving a snack, opening a ziplock, unlocking a door... carrying 3 items simultaneously, now require thought and effort. Sitting here typing this journal is a challenge; some fingers are reluctant to respond, my forearms and back tire easily. I will type these updates out but it will take much more time and effort.
As I mentioned in a prior entry, as I lost function, I would devise new strategies to maintain my functionality. With my arms, I can no longer do that, I have reached the point where I no longer have enough reserves to compensate for the deficits that Al inflicts upon me. But, this is where I give God praise for Kathy; without her, this portion of the journey would be difficult. Kathy has quietly, seamlessly, almost on cue, stepped in to fill the increasingly number of gaps in what I can do. She has a sixth sense about it, often assuming new roles of help, often before I realize I need it. She does this quietly and efficiently, always there, always ready, sparing my fragile ego the bruise of the need to ask for help. She lifts me up and carries me when I most need it; she is my Joan of Arc in shining armor.
Our marriage is much stronger now. We are closer... much closer. This is what I consider is a collateral benefit of Al. We know that our time together here is finite so we talk, we share, we laugh, we cry, we savor our moments together. Simple times: cuddling and hugs before sleep, saying goodbye when leaving for work, a quick hug and a kiss are special. We enjoy them, remember them, because soon, they will only be a memory. Fights are a rarity; in light of Al, differences are stupid and inconsequential. Gone are all the complexities, Al has stripped away all the worldly, materialistic distractions and has left us with a simple relationship of love expressed continually in preeminent commitment, care and support of each other. Our marriage is good, the best it has ever been, better than I ever imagined. And, the irony of it all, I don't think this would have happened without Al.
Monday, August 8, 2011
Baja Update - Mon 8/8
Today after having our morning devotion at 6:45 am and a pancake breakfast, we headed out to the job site in the 2 vans on a very bumpy dirt road similar to the effect you get if you've ever ridden Star Tours, but for about 10 minutes. We met the family who will be receiving the house, greeted by the father, Francisco first, then Marisol who shyly poked her head out their existing home but then warmed up quickly with hellos and hugs, and Rigoberto. We met the mother, Amalia later in the morning.
At first, we were a bit overwhelmed with the stack of "unmarked" lumber, tools, and house plans. We even hit a few snags along the way such as cutting the lumber the wrong size and locking our van keys inside the car requiring a call to the local locksmith who charge us $200.
That's pesos which translated into roughly $20. With some assistance from our host at IDT, Pastor Steve and from hints/tips from our brothers and sisters at Wintersburg Presbyterian, we were able to frame and put up all 4 outer walls, attach an inside wall, paint 3/4 outer walls, frame and put up the roof reinforced with plywood on top.
Allison and Nicholas helped lead the VBS for the neighborhood children today, then joined in the construction. It was truly awesome to see the our members work like one body mentioned in Paul's letter to the Corinthians where every part was doing his/her job to contribute to the mission at hand where Christ remains our head. Even Francisco and his family pitched in to help build their house.
Although we are building at a great pace, we know that the house build is the secondary project. Please continue to pray for this family that God will provide us the opportunity to share the Gospel of Jesus Christ with them. This is our primary purpose. Though we have only just met, we already are establishing friendships through smiles, hand gestures, sharing building a home together, and through Doug and Brian's ability to translate in Spanish. We are so encouraged and touched from reading your letters each night. Though we are tired from today's work, we are encouraged and thankful that God is faithful and is providing us the strength to continue His work. We look forward to updating you with the remaining days' work.
Love in Christ,
Brian Lowe
The 2011 Baja Team
Sunday, August 7, 2011
We're on our way....
Eight months of planning and prayer coming to fruition... We're one our way. Two churches,, one mission, to share God's love and grace to the people of Mexico.
We left at 6:30 this morning 2 vans packed to the hilt. A roomful of supplies, 18 people, all our luggage, 2 bicycles a seeming impossible mountain of stuff somehow miraculously packed into the vans.
We held our breaths and prayed a silent prayer, all 5 vans were pulled into the secondary check at the border. Would they confiscate our precious cargo. Fortunately, she checked then motioned each van through. Praise God we went into Mexico, everything intact!
A stop for lunch at Costco in Ensenada then off to Vicente Guerrero. We arrived at 4:30. Steve Yoshimi, then later Kathy, his wife were here to greet us. Steve gave us a briefing of IDT, the area and the people.
Then off to Quesa Tacos for dinner. ..absolutely delicious. After eating his first of seven tacos, Will said he now understood why I had so many exploratory mission to Vicente Guerrero. Later, Brian agreed. I am now confident that I will never lack volunteers to accompany me on any future exploratory mission.
165 tacos later, between LAH & WPC (I told you they were good) we finished the day, first with small group prayer with WPC and then sharing the letter of support from Brian and Sarah. Thank You.
I'd like to close with a heartfelt thank you to all my brother and sisters at LAH and others for your support. It has been an incredible experience to witness first hand the spirit and generosity of not only our church but also from our friends and colleagues in the community.
Tuesday, July 12, 2011
Lunch with Dr. C.
The other day I had another appointment with doctor C . It was a most unusual appointment. It started with an e-mailed me stating that he wanted to meet with me alone... without Kathy. The fact that it was going to be just myself, concerned me, I was afraid that this was going to be the appointment where he would unleash the harsh realities of what I would be facing in the future with Al. I had been telling him that I wanted to know the brutal truth of the hardships that Al would bring. This would be the day he would give me what I was asking for. It must be bad news because he offered to drive to see me at my job rather than have me come to his office.
He came by and pick me up and took me out to lunch. At lunch instead of flogging me with the brutal reality that I was quietly bracing for, he surprised me with a gentle compliment; "You're doing surprisingly well". I smiled and replied "It's God and prayer. I have a LOT of people praying for me", grateful for the army of supporters who have been faithfully praying for us. I was thinking of my physical status; although my arms are considerably weaker, my body is holding up better than I expected... weaker but better than expected. However, as I was to realize later, Dr. C's statement was directed more at how I was doing mentally rather than physically.
As our lunch continued our conversation ranged from ALS to life to peace to family to goals to death to hope and intertwined throughout this whole conversation was God. As we spoke, I realized how much he was intertwined in every aspect of my life. I could not speak of any of this without talking about God.
I relished this time we spent together, he was someone that I could speak openly and candidly to. He understood as well as anyone could of what I was going through. He shared valuable insight to situations that I was facing. But, most importantly, I was able to speak to him without worrying about making him uncomfortable or he trying to think of comforting things to say to me. It wasn't a conversation between doctor and patient but rather two people sharing a common ground.
During this time he emphasized that I needed to speak out, to share my message with others. I was surprised. I wasn't expecting a comment like this to come from him. I thought about it and agreed. This is one of the reasons why I am returning from my hiatus to post once again.
Dr C is a craftsman, a treasure of a doctor that makes this world better place. I continually give thanks for the good fortune of having him as my guide on this journey. At the end of our lunch, as he was driving me back to work, he revealed another side that deepened my respect for him. It revealed a side of someone constantly striving to hone his craft, willing to use creative and unconventional means to gain insight into his patients, their problems and solutions. He shared with me that this lunch was, in part, an attempt to gain a further understanding to a problem that he's been trying to understand. He wants to know what it is that differentiates people's responses when given the diagnosis of a terminal disease. What is it that enables some people to handle it well while others fall apart? The lunch was a part of that quest. By getting to know the people, to understand who they are, to figure out what makes them tick, Dr C. Is trying to understand. Few physicians would do this. I was one of his unofficial 'research' subjects. If it makes him a better physician, that's fine with me. It will be better for those who follow. Besides, he paid for lunch. ; )
Thank You Dr. C.
He came by and pick me up and took me out to lunch. At lunch instead of flogging me with the brutal reality that I was quietly bracing for, he surprised me with a gentle compliment; "You're doing surprisingly well". I smiled and replied "It's God and prayer. I have a LOT of people praying for me", grateful for the army of supporters who have been faithfully praying for us. I was thinking of my physical status; although my arms are considerably weaker, my body is holding up better than I expected... weaker but better than expected. However, as I was to realize later, Dr. C's statement was directed more at how I was doing mentally rather than physically.
As our lunch continued our conversation ranged from ALS to life to peace to family to goals to death to hope and intertwined throughout this whole conversation was God. As we spoke, I realized how much he was intertwined in every aspect of my life. I could not speak of any of this without talking about God.
I relished this time we spent together, he was someone that I could speak openly and candidly to. He understood as well as anyone could of what I was going through. He shared valuable insight to situations that I was facing. But, most importantly, I was able to speak to him without worrying about making him uncomfortable or he trying to think of comforting things to say to me. It wasn't a conversation between doctor and patient but rather two people sharing a common ground.
During this time he emphasized that I needed to speak out, to share my message with others. I was surprised. I wasn't expecting a comment like this to come from him. I thought about it and agreed. This is one of the reasons why I am returning from my hiatus to post once again.
Dr C is a craftsman, a treasure of a doctor that makes this world better place. I continually give thanks for the good fortune of having him as my guide on this journey. At the end of our lunch, as he was driving me back to work, he revealed another side that deepened my respect for him. It revealed a side of someone constantly striving to hone his craft, willing to use creative and unconventional means to gain insight into his patients, their problems and solutions. He shared with me that this lunch was, in part, an attempt to gain a further understanding to a problem that he's been trying to understand. He wants to know what it is that differentiates people's responses when given the diagnosis of a terminal disease. What is it that enables some people to handle it well while others fall apart? The lunch was a part of that quest. By getting to know the people, to understand who they are, to figure out what makes them tick, Dr C. Is trying to understand. Few physicians would do this. I was one of his unofficial 'research' subjects. If it makes him a better physician, that's fine with me. It will be better for those who follow. Besides, he paid for lunch. ; )
Thank You Dr. C.
Friday, July 1, 2011
I'm back!
Hi Everyone
Sorry for the long silence. It's not because things have been going badly, but more so because I've been busy running around trying to get things done. I haven't caught up, far from it, but I realized if I waited till I caught up to repost, there wouldn't be anymore entries.
Status wise, thankfully, I am still doing well. Thank you all for your prayers. It had seemed as if Al had slowed a bit for awhile. At times I even began to wonder if I had much more time than Dr. E. had initially given me. This was a nice bit of time to feel almost normal again. Unfortunately, Al has resumed his relentless march, picking away at my muscle strength.
I am beginning the next of Al's phases. Up to now I have been able to compensate for the weakness, but now it's progressed to a point that my limitations are becoming visible and are affecting my day to day activities - crap. Oh well, it's just another thing I have to deal with. Actually, it's a mental game; as I become physically limited in yet another way, I devise a new strategy to overcome it. So far, so good : )
Mentally, I'm still doing fine and I'm enjoying life more than ever. Thank you friends for all the wonderful support - you do more than you can ever imagine! I know to some that I may be sounding like a broken record but I have to give a big shout-out to God. I am constantly puzzled at my positive attitude. Despite declining functionality of my body, at times on an almost daily basis, I'm pretty happy. Happy to the point that at times I begin to question if I really understand what is going to happen. But, I do understand and the only explanation I can give is God.
I am continually amazed at what God can do once you go beyond the superficial and bring him in and develop a personal relationship with Him. To some this may sound foreign.... strange. All I can do is to invite you to see for yourself. Dig deep, he's there. It's not because I'm trying to 'convert' you. Nope, honestly, it's just that I've found something incredibly good and I just want to share it.
Blessings,
Dan
Sorry for the long silence. It's not because things have been going badly, but more so because I've been busy running around trying to get things done. I haven't caught up, far from it, but I realized if I waited till I caught up to repost, there wouldn't be anymore entries.
Status wise, thankfully, I am still doing well. Thank you all for your prayers. It had seemed as if Al had slowed a bit for awhile. At times I even began to wonder if I had much more time than Dr. E. had initially given me. This was a nice bit of time to feel almost normal again. Unfortunately, Al has resumed his relentless march, picking away at my muscle strength.
I am beginning the next of Al's phases. Up to now I have been able to compensate for the weakness, but now it's progressed to a point that my limitations are becoming visible and are affecting my day to day activities - crap. Oh well, it's just another thing I have to deal with. Actually, it's a mental game; as I become physically limited in yet another way, I devise a new strategy to overcome it. So far, so good : )
Mentally, I'm still doing fine and I'm enjoying life more than ever. Thank you friends for all the wonderful support - you do more than you can ever imagine! I know to some that I may be sounding like a broken record but I have to give a big shout-out to God. I am constantly puzzled at my positive attitude. Despite declining functionality of my body, at times on an almost daily basis, I'm pretty happy. Happy to the point that at times I begin to question if I really understand what is going to happen. But, I do understand and the only explanation I can give is God.
I am continually amazed at what God can do once you go beyond the superficial and bring him in and develop a personal relationship with Him. To some this may sound foreign.... strange. All I can do is to invite you to see for yourself. Dig deep, he's there. It's not because I'm trying to 'convert' you. Nope, honestly, it's just that I've found something incredibly good and I just want to share it.
Blessings,
Dan
Monday, May 23, 2011
Baptism...
Sunday was a wonderful day! My youngest daughter, Allison, was baptized. Her testimony is wonderful.
http://www.youtube.com/watch?v=-dcbs1l_7E0&feature=email
Allison's favorite verse:
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11
Praise God!
http://www.youtube.com/watch?v=-dcbs1l_7E0&feature=email
Allison's favorite verse:
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11
Praise God!
Sunday, May 22, 2011
I am going to pay a visit...
This Tuesday, I am going visiting… I am going to visit an older gentleman, whom I haven't met yet, who also has ALS. A friend from church asked if I would visit him; he is the father of one of her friends. She felt, perhaps, my visit would help. Learning from all of you what support can do to lift the spirits; I said yes – of course - this is my opportunity to help a fellow traveler, to pay it forward.
He doesn’t believe in God and I’ve been told, is struggling with the disease and what it holds for him. I hope to share Christ with him. I hope he can see how God has worked in my life to give me strength and peace in facing the challenges that lie ahead. Through Him I hope he can find a similar peace
Evangelism is new to me. I’ve never done this before. In fact, until recently, I thought I would never do. “Not for me”, was my gut reaction whenever the subject came up. I was never comfortable with it, never felt qualified. I’m still not qualified; I know more but not enough yet, but I want to do it, now. Hopefully I will have enough to answer all of his questions.
Please pray for us, that our hearts will be open, that God will guide what I say.
Blessings....
Last Tuesday night was a special treat, Kathy and I had dinner with Doreen and Carlton. Kathy had known Doreen way, way, waaay back, when they were teenagers. It’s been 30+ years since they have last talked to each other. For me this was my first time to meet Carlton and Doreen. But, when we met it seemed like we were old, familiar friends. We sat back shared a nice dinner together and spent the night talking and enjoying each others company.
Doreen is one of my angels. She came out of nowhere after hearing of my diagnosis through a mutual friend. She regularly emailed us words of prayer and encouragement. Through our emails of support back and forth we have developed a very warm friendship. The amazing part about Doreen is as she is supporting me up in prayer and e-correspondence, she is struggling with the life changing impact of a major illness herself. Doreen has been recently diagnosed with cerebral lupus, a very rare form of lupus. It is only the 3rd case that her doctor has treated, leaving one to worry about his expertise on this matter. In addition to struggling with the lupus, Doreen also has to deal with the harsh effects of chemo and steroids used to keep the lupus in check. If that wasn’t enough the lupus has piled on all sorts of food intolerances. She now has to avoid chocolate, oats, dairy products and gluten – anything derived from wheat. I find it incredible, with all that she had on her plate, when she heard of my news, she reached out to me, a total stranger. But, to meet her, is to understand why. She is that kind of person.
When you face such a mountain of uncertainty, your world changes. You no longer share that fundamental cornerstone in life here which everyone else takes for granted – a future. It forces you to walk a different path separate from the others. Although you are in the midst of people, the uncertainty leaves you feeling isolated, alone.
This is where those care packages of compassion - the cards, notes, invitations – can do so much. They are hugs of care that unravel the isolation, messages that others are with you on this path, if only for a moment, sharing this journey with you. You don’t necessarily need to tell them they will be healed or that everything will be alright – it often isn’t and they know it. Just be sincere and honest, let them know you care. You do not even need to be an acquaintance. One of the nicest surprise moments were when complete strangers have written to let me know they care. Please remember this when you encounter the next traveler that shares a similar fate. Don’t underestimate the power you possess to help them. It is far greater than you imagine. Each moment you share with them is moment you walk with them on their path. This is something I want to share with you. An insight I’ve gain from my vantage on the other side.
Be brave. Trust God.
Remember, He works in many ways and you may be His angel to give comfort to another on their journey.
Remember, He works in many ways and you may be His angel to give comfort to another on their journey.
Sunday, May 15, 2011
Reality Check....
Thursday, we met with my palliative care physician, Dr C. This was our 3rd appointment, meeting about every 4-5 weeks. Almost as a concession to the disease, in palliative care, the goal is no longer about a cure, but on helping families cope with the course of the disease and preparing for its eventual outcome. It is about mitigation rather than cure.
Dr C is a master of his craft. He has the perfect balance of expertise, compassion, humor and push. He is helping us prepare for what is ahead by tuning in and adjusting our psychological, social, financial, physical well being. He knows the path we face ahead, its turns, twists and pitfalls. His work with countless of families has familiarized him with every aspect of what lies ahead for us. To me he is more a guide on my journey than a physician.
Today, he knocked me down a few notches, brought me into a more realistic realm. As many of you know, mentally I’m doing very well, almost too good. I believe Dr C picked up on this and subtlety directed the course of our meeting to let me know – slow down, you have some tough times ahead. He never said anything directly and only touched on it lightly, but by his questions and his remarks, I understood, clearly, his concerns and where he was steering us. He is the veteran, this time he didn’t commend us on how well we were doing, instead he chose to caution us. Has he seen this response before? Times may be good now but I could tell by his nuances that the storm we will face will be VERY big. Perhaps, I have been enjoying and relaxing too much. I always have wondered, quietly, how I will do mentally and spiritually once the tough times come and this meeting has brought it forward. Maybe, I underestimated the challenges ahead. I began to worry. Will I become depressed? Will I doubt God? Perhaps, I am not as strong spiritually as I will need to be. I hope not. I am praying for strength and courage – for myself, Kathy and the girls.
Tuesday, May 10, 2011
My Easter Sharing ...
Better late than never. This is my first try with video and it took me hours to get this up on the internet... groan. Well, it's finally up. Hopefully it will work okay.
I wrote in a previous entry about sharing during Easter service. It's a from-the-heart explanation of what gives me courage to live life as I do in the face of a terminal diagnosis.
Let me know what you think...
Easter Sharing
Part1
http://www.youtube.com/watch?v=ZOqaHt8kmQc
Part2
http://www.youtube.com/watch?v=I2D7taD0LTY
Friday, May 6, 2011
An 18 year old sharing the same journey
http://rafu.com/news/2011/05/fly-me-to-japan/
Story of a brave 18 year old afflicted with ALS. Reading his story, my heart goes out to him. He is so young, just starting to experience life. Please pray for him and his family.
I’m tired today…
Don’t know why but I didn’t have any energy today. I started the day on the couch to watch a little TV. I was a little tired so I figured I’d park myself here and get going once I felt more energetic There is a lot of things around the house that needs attending to. That energy never materialized, just sat there watching television. By the afternoon, I kept dozing off so I decided to take a quick cat nap. Then, reenergize, I would get stuff done. Well, that cat nap lasted till 6pm. Day gone, nothing done – what a waste. Don’t know if it was AL (the ALS) or my inherent laziness but I’m not happy.
Accomplishing things around the house is something that I’ve been having trouble with for the past 6 months. It takes quite an effort now to get started. Even when I do get going, it doesn’t last long. Sure, now it’s physically more difficult to get around but even 6 month ago when I felt relatively good, I was having trouble. Inside, it’s almost as if a switch inside my brain has been switched off. The push inside me to get things is no longer there.
I suspect this is another facet of Al, a mental side. Everyone knows his physical side, how he steals your physical strength away, but living with him I now see he has a mental side also. It’s another challenge to overcome. Always changing [my body], always adjusting [me] that’s the new norm.
Tuesday, May 3, 2011
My Chariot Awaits
I just received word that my scooter order just went in. It took a little while longer, but everything is complete and I should be receiving my chariot in a couple of weeks. This is great news since I suspect that I will soon need it to assist my getting around not long after arrives. When we started the process a couple of months ago, I felt it was premature. I was still walking fine and had no trouble getting around. I felt guilty ordering something so expensive while my legs felt strong. It was on Dr C’s (my palliative physician) recommendations that I went ahead with it and now it appears to be a good call. The legs are getting a bit tired now and I’m going to need that zoom-mobile pretty soon to help me get around.
I’ve always said that there is always something to be thankful for and this is a great example of just that. Normally, a scooter isn’t in the cards for me. The normal process here is to go directly to a motorized wheelchair when walking becomes difficult. It’s all part of the government compensation guidelines and the insurance process. For me, this sucks because the scooter would be so helpful in helping me retain a sense of normality for a little while longer. It’s only because of the The Americans with Disability Act and great people such as Dr C, Tony, and a few others who pushed beyond the “No” to make it happen.
I am grateful, it is something I will always keep in mind. The power we all have to significantly impact the lives of those around us. Dr C and Tony could have stopped. Their job didn’t require them to push as far as they did and I wouldn’t have faulted them – they were doing their job. But, because of them I will get to enjoy this life a little better for a little while long – Thanks, I owe you one.
Prayer
Yesterday we went to Wintersberg Presbyterian Church in Orange County. Most of the members at LAH were at a family retreat this past weekend so we decided to go to Wintersberg. We've been there a few times in the past.
Although, I have always prayed, it is a weak link in my Christian walk. ALS has revealed this as we moved forward with the diagnosis and since then I have been working on improving my prayer within my life.
The experience we had at Wintersberg was very nice. It was a perfect mesh with my current walk. The sermon was about prayer, what it is and how to do it. More importantly, after service they had a small prayer group to lay hands on and pray for anyone in need. Pastor Fred came up to me after service. He knew of my diagnosis. As we talked he asked if I would like to have them pray for me. Normally, in the past I would have deferred. Being in the center of a prayer group would have been very uncomfortable for me. I am changing. I welcomed the invitation and was spiritually lifted during the prayer. My faith in prayer grows stronger each day. I believe if I am to be healed it will be through prayer. I do believe firmly that God can heal me. He can heal me - I just don't know if this is His will.
Although, I have always prayed, it is a weak link in my Christian walk. ALS has revealed this as we moved forward with the diagnosis and since then I have been working on improving my prayer within my life.
The experience we had at Wintersberg was very nice. It was a perfect mesh with my current walk. The sermon was about prayer, what it is and how to do it. More importantly, after service they had a small prayer group to lay hands on and pray for anyone in need. Pastor Fred came up to me after service. He knew of my diagnosis. As we talked he asked if I would like to have them pray for me. Normally, in the past I would have deferred. Being in the center of a prayer group would have been very uncomfortable for me. I am changing. I welcomed the invitation and was spiritually lifted during the prayer. My faith in prayer grows stronger each day. I believe if I am to be healed it will be through prayer. I do believe firmly that God can heal me. He can heal me - I just don't know if this is His will.
Thursday, April 28, 2011
New Position
I'm off to a new hospital as part of a start-up team to prepare for opening day in November. This is a big change for me, I've been at my last position for over 25 years, the last 15-20 in the NICU. It was an extremely difficult decision to leave. In my opinion, this is one of the very best pharmacist positions in all of Southern Cal. I loved it. The people there are wonderful and as a team we delivered excellent care to our patients. Our role was integral to care of the patients. However, what I am most proud of is the part my predecessor and mentor, Bob, and I had in the design and implementation of our pharmaceutical care system in the unit. A computer program system that made care safer, better and more efficient for the nurses, physicians and pharmacist.
So, then, why did I leave? First of all, I didn't know I was sick when I decided. The other reasons are complicated but, simply put, I felt the culture within the organization and management that would make staying on top very difficult. Unless I was willing to invest a lot of hours at home, staying on top would not happen. I didn't want to be a part of the decline. On the other side, I was also enticed at the opportunity to be involved in the start of a new hospital. To take a bare pharmacy to a fully functioning department would be challenging and fun. Also, the new director and the other transferring pharmacists and technicians were people that I have worked well with and respected. I was excited at the opportunity to work with these people. At the possibilities to create something special at Ontario.
We are now planning the start-up and this diagnosis is sitting in my mind like a big goose egg. For me, it puts a crimp on a lot of the planning now, because I no longer know what I'll be able to do in the future nor how long I'll be able to do it. This sucks, I was so looking forward to this. There was so much I wanted to accomplish......
Wednesday, April 27, 2011
Insidious Beginnings
Looking back, I realize now that there may have been other signs that something was wrong. I had cramps... LOTS and LOTS of muscle cramps not 1 or 2 but 5 to 10, sometimes more a day. They were in my legs, hands, ribs.. all over the place. After reading neurology texts about ALS, I now know that cramping is one symptom of ALS. I'm not sure when the cramping started but it must have started at least 6 month before the thumb weakness, probably early 2009 is my best guess.
I'm blown away that something so deadly can start so innocently. Disguised as a minor anomaly it begins it's insidous sequence of denervation and muscle wasting. I wonder when this started. What caused it? When did it become irreversible? It's unlikely that I'll get the answers here, but I want to know. I guess I will have to wait until I see Him.... I'll have to wait till then.
Status
I'm doing well... considering. My left arm - where the weakness first began - is very weak. I can't carry anything with that arm except for the lightest of items such as a cup of water or my kindle and even with that it's only for a few minutes. My right arm is okay, about 30% strength. Everything else is weaker also but not as much.
It's all relative and I've learned to live by a new standard. Considering what I'm facing in the future I'm ever so grateful that we can still live a fairly normal life.
How much longer will our lives remain "normal"? I don't know. Judging by the decline, which has been fairly constant, In a few months I don't think I will be able to use my left arm. Wheelchair is perhaps 3 - 6 months down the road... maybe more. Just an estimate, but you get the picture.
Sounds sad I guess but I'm still fine. Perhaps it really hasn't hit me yet. I'm really perplexed by this. I should be sad but I'm still happy and enjoying life. Life is good. No... not good but GOOD! This past weekend, Easter weekend, was very nice... I'll tell you about it later.
One verse that came to mind when I first received that diagnosis:
Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. Joshua 1:9
You know, It's true. He is with us. He gives us the strength and courage.
Praise God.
It's all relative and I've learned to live by a new standard. Considering what I'm facing in the future I'm ever so grateful that we can still live a fairly normal life.
How much longer will our lives remain "normal"? I don't know. Judging by the decline, which has been fairly constant, In a few months I don't think I will be able to use my left arm. Wheelchair is perhaps 3 - 6 months down the road... maybe more. Just an estimate, but you get the picture.
Sounds sad I guess but I'm still fine. Perhaps it really hasn't hit me yet. I'm really perplexed by this. I should be sad but I'm still happy and enjoying life. Life is good. No... not good but GOOD! This past weekend, Easter weekend, was very nice... I'll tell you about it later.
One verse that came to mind when I first received that diagnosis:
Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go. Joshua 1:9
You know, It's true. He is with us. He gives us the strength and courage.
Praise God.
Easter
Thank you all for coming out to help with the Easter Breakfast! It was fantastic seeing so many coming out to help. The spirit in our church is truly incredible, to see how everyone came together to support such a worthy cause was very encouraging.
I apologize that I wasn't there more to help with the clean-up. I was scrambling to get my message done for service. Seigo, asked a few days before to share during Easter service. I was apprehensive because I'm a terrible writer and it takes me forever to organize my thoughts. I didn't have much time because of the Easter breakfast prep still to do but I trusted Seigo and felt God wanted me to speak so I agreed. I was up past 2am the night before trying to get something cohesive down and was scratching in last minute edits during service. But, God is good...I walked up with my rough draft full of scratches and notations. As I stepped up, He took over and calmed my spirit, organized my thoughts and allowed the words to flow and express what was in my heart - Thank you Lord.
I apologize that I wasn't there more to help with the clean-up. I was scrambling to get my message done for service. Seigo, asked a few days before to share during Easter service. I was apprehensive because I'm a terrible writer and it takes me forever to organize my thoughts. I didn't have much time because of the Easter breakfast prep still to do but I trusted Seigo and felt God wanted me to speak so I agreed. I was up past 2am the night before trying to get something cohesive down and was scratching in last minute edits during service. But, God is good...I walked up with my rough draft full of scratches and notations. As I stepped up, He took over and calmed my spirit, organized my thoughts and allowed the words to flow and express what was in my heart - Thank you Lord.
Okay, here goes nothing
Perhaps, this will work. I've thought about a blog for awhile to keep everyone abreast of how I'm doing. I didn't know if I could post enough to keep it worthwhile. I am a lousy writer. It takes me an hour to write a couple of paragraphs. But, there are so many caring individuals who have written, emailed, messaged and prayed for us. I am humbled. Athena - I'm starting this for you. Your message and suggestion is the final push to get me going. Wish me luck.
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