Gil's Story

I have been diagnosed with ALS. My name is Gil, I’m 54 years old and married to my beautiful wife for 25 years. We have two sons, 24, and 22 years old. Our youngest son is married and they have a daughter. I woke up yesterday morning/noon thinking what am I going to do today? Oh boy, my legs are really hurting and feel like they are lead weights. Yep, got to get up to take my meds. I sure need them right now. My wife knocks on the bedroom door, my mother is on the phone. She calls just about every day and I’m happy she does.
Six or seven years ago I remember playing basketball with my sons. I was never that good at this game but playing with/against my sons was always fun and I actually won a few games. I’m trying to play defense one day, I’m moving my body in front of him only my legs aren’t moving- I fall. As the months past I began to notice several stumbles and stiffness in my legs. After several doctors/tests, nothing definitive was found. I thought, I was just getting older(yipes!). A few months later I fell again, this time down the stairs to the basement floor, thankfully with no major injury. A couple neurologists and more tests later- I was told it was ALS. Finally I knew what I had but this doesn’t sound good. I was told it I had a slow progressing form of the disease. You ever feel good and yet scared at the same time?
At that time I felt some disbelief, fear, anxiety, anger, sadness, stress, etc. Later I thought, so these are the emotions of someone with a fatal disease and you really don’t understand until you’ve been there. I read a lot of information regarding the disease. I coped thinking, ”Hey, I’m still in pretty good shape, I’m not going to let this change me and burden my family. I have my faith, my family and my friends.”
Five years later in lifes journey, I’m using a cane and 4-wheeled walker to get around. I am laided off from my work and currently on temporary disability. I still drive but getting in and out of the car is the difficult. I fatigue easily, experience nausea, soreness/cramping in my muscles, take several medications, can’t sleep well, or sleep a lot. I have realized the change in my health and the probable decline I face which will or could become a burden to my family. Some days, I’m tired of feeling bad. Yes, there have been changes. Thankfully I was wrong about my thinking!
The Effect of Changes
I have ALS.
• What I did not realize is my wife has ALS. No, she doesn’t have the disease but she has me. If I’m struggling with my health she feels even more helpless. She is with me everyday and needs support as much as I do. We’re both committed to learning to adjust together. I have learned to appreciate all she has always done, even more. Really!
• My family and friends know this and want to help. I would refuse help still trying to do what I felt able. My mistake! I need their help and they need me to let them. To have friends or family visit, call or send cards is so encouraging! At first I thought it was “nice”(and it is). That said I don’t know of too many people who don’t have “busy” lives and yet, many have taken time to do these and other things for me. I am so thankful for them!
• Where would I be without all the healthcare professionals (at U of M) who are there to help as only they can? They have become an important part of my life and I am thankful for them. The ALS Association. What a wonderful resource. The Michigan Chapter in Troy has been a great support for my wife and I. Meeting and sharing with people who are going thru similar experiences is encouraging for all.
• The Lord knows this. God has been and is my(and my wife) strength! The Lords’ Church(the people) have shown me how to encourage and bless others by their wonderful example. I believe He has given me an opportunity to bless others. I have come to appreciate the simple experiences of my life. I never thought I took for granted any one I hold dear. Wrong (again)! I have come to a greater appreciation of all my family, friends, and others who face illness or injury. Instead of drowning in sorrow for myself, I remember my family and friends have their own daily struggles too.
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I have a 3 year old granddaughter, Adreanna. She knows I’m not able to do what I have in the past- chase her in the yard, carry her when she is tired, and take long walks. Yet, she still enjoys the things we can do together like read books, push her on a swing at the park, play games on the floor. If I get up without my cane, she runs to get it for me. She offers to do more than she is physically able yet understands she has limitations too. Her focus is on what I can do, not papa is sick. She does this with a wonderful smile and attitude. She is a wonderful example for me. She is my Joy!
Admittedly, I do not understand all the difficulties more typical ALS patients and caregivers courageously face each day. I’m simply saying I feel able to relate a little better with the emotions of any person who is struggling with an incurable fatal disease. I’m still learning from meeting others with severe illness. I have sometimes thought of how close to death I have often been just driving a motor vehicle. God has given me time to bless and encourage others in ways I am able, by listening, sharing, and/or just being there.
In closing, I recently “dug up” a wedding anniversary card I received from my wife a couple years ago. The cover read:
“Love is not counting the years, love is making the years count”
I tried using the word “life” in place of the word “love”. They both sound good to me!