Learning to Overcome My Biggest Fears
Photo by Shutterstock Dealing with ALS takes a positive outlook.
Living in the present has always been hard for me. I had such grand dreams for my future. It is hard to come to terms with the fact that I won’t go on a camel trek in the Sahara and spend the night under the most beautiful sky imaginable, or follow my passion for woodworking by becoming a heritage furniture carpenter or a tiny house builder.
Now that I have ALS, obsessing over the future also means I constantly worry about how my disease will play out. I play the what-if game every day. What if I choke? What if I get pneumonia and end up in the hospital? What if my muscle spasms never go away and I’m in pain forever?
Last week, while my husband watched me carefully as I swallowed my pills, I had a revelation. If I choke, I trust my husband to save me. Over the days that followed, I stopped playing the what-if game and I started thinking about the past. I remembered all the ways I had dealt with challenges. I asked for help when necessary. My respiratory therapist showed me exercises that will clear my lungs and make pneumonia less likely.
Many times, my own resourcefulness made my life better, like when my hip pain began, I had the idea of putting a bolster under the hip to help correct the alignment. This helps prevent the pain from even starting in the first place.
I’m sure there are plenty of mindfulness techniques to help ground you in the present, but for me, trust — in myself, my caregiver, and my clinicians — has helped me through living in the future to living in the present.
What has helped you overcome worries? Please share in the comments section.
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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ALS.
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Comments
Sheila Lowrie
I often say I have two goals each day, 1) Don't fall! 2) Stay in the moment don't project what may be........... I remind myself that in the past, preALS days, many of the things I feared the most never happened. Then I remind myself we are all on the same journey, some of us just have a better roadmap, I don't necessarily like my roadmap but there it is.
Celeste
Well said. Thank you very much!
Mike Leist
Worrying about a potential, or probable, negative outcome robs us of the potential to enjoy what we can of today. I choose not to spend what unknown amount of time I have left dwelling on what I might not have or experience, or stressing about the gap between my future expectations and desires and my new reality.
Lou Rosen
I have the Bulbar Palsey type and cannot speak at all and receive all food and drink through my feeding tube. I have been using a tube for more than a year and now have a little Mic Key that is much easier and faster to use. I feed and pretty much take care of myself. Fortunately I have no limb involvement. Not being able to talk or eat and drink really sucks. No ways about it. My quality of life comes from reading, listening, movies, museums, nature walks and zoos. My wife is great but I try to rely on her as little as possible so she can go about her life as much as possible. I realize there will come a time when I need her more. My doctor team at Cedars Sinai are terrific and my three month check ups are helpful in letting me know where I am in terms of the disease. It has been two years now and it is slowly progressing but I am also eighty five years old and hard to know how much decline is old age and how much is ALS. I have no pain anywhere. I take a hugh number of pills and have to change the regimen sometimes when they bother my stomach. My most depressing moments come watching other people eat things I love and my boys having a beer and good conversation over sports. I really miss that. Eating out is difficult and I usually just go in the car and feed myself and come back to the table and try to paricipate with my Boogie Board. People are so nice but It really is depressing. I have lots to be thankful for but it is good to bitch once in while. My suggestion to others is get a feeding tube as soon as you can. It eleminates much of the fear of aspiration. It is easy to use. Medicare pays for the food and equipment needed. The Mic Key so so small you cannot see it through your clothes. The other recommendation is if you can still use your hands get a Boogie Board. I use mine twenty times a day. I have a computer program called Proclevity and it helps with one -on -one communication. Hard to use in groups. Not being able to use the phone sucks so I use e mails and texting. If I lose use of my hands there are alternatives using your eyes and mouth.
Let's get on with finding a cure for this terrible disease. Enough already.
Bill Bonney
If I get through the day without falling or incontinence, and can haul my useless legs into bed, it's a good day. In four years I've gone from dragging a leg, to a cane, to a walker, to a wheelchair. On top of that, my arms and hands are heading in the same direction.
Fortunately, I can still eat and talk, although my voice is being compromised. As much as I miss my former, active life, before this horrible disease, there is something about this that is unique and interesting. I am forced to let others help me and that is humbling to say the least. It is a treat to witness how wonderful people can be. More than ever I am working on my spiritual life and preparing myself for the next act in this incredible drama of life and death. I laugh a lot and stay busy just keeping up as I live alone except when my wonderful aide comes to help me 3 hrs. a day, 5 days a week. She's been with me 2 yrs. now and I absolutely love her.
When we have extra time I try to help her with her English and for my winter project we are working on putting a C.D. together of personal stories, poetry, and music to give to family and friends.
What fun! God bess you guys, stay busy in any way you can and have fun in any way you can!