Distraction vs Reality

A couple of my friends who blog about ALS and live in the northern hemisphere (Liz in Canada and Christian in Germany) have written about death from ALS in the last week. The days are getting shorter and the leaves are blowing off the trees. Halloween on October 31st with lots of skeleton decorations and Dia de Los Muertos in Mexico on November 1 (All Souls Day in the Catholic church) are holidays with roots in death even though now they are celebrations. So it makes sense that people think about death this time of year.

I am writing about distraction because it’s a coping method for dealing with a fatal disease. I like to be busy and get frustrated when my allergies cause me to have to be tied to my cough assist and suction machines. I must be allergic to sage brush now and that is a plant that spreads pollen in the wind and it will be flying around until we get a good rainy day. (Which might happen Wednesday if the current forecast is correct). Sagebrush is the state flower of Nevada and the hills around Reno are covered with it. I still have major post nasal drip that gets stuck in the back of my mouth. If I breathe through my mouth I breathe through mucous and can’t get a breath. That is why I am still using the napkin in my mouth. It forces me to breathe through my nose. I have a good nasal spray, Dymista, so I am usually able to keep my nose clear. I have a daily to do list and I try to do at least two things on it each day. So my daily to do list and managing allergies are a big part of distracting me from the realities of how this will end. ALS deaths are usually peaceful. My diaphragm will become less and less effective and then I will have difficulty expelling CO2 and I will sleep more and more. I won’t be gasping for breath. Not a bad way to die. My loved ones can be with me. I feel bad that it will be hard for them but I didn’t write this book and can’t change the ending.

I was disappointed to not be able to go to aqua fitness on Saturday November 11, the first day I could swim after my port surgery on October 10. My allergies were too bad. I have tried nearly every antihistamine on the market. Nothing keeps my throat clear long enough. The trick is to find something without major side effects: One that won’t dry my eyes too severely and one that won’t make me too drowsy. I am now trying Zyrtec and a new formulation of it called XYZAL.  It could take up to a week to be effective but my first 10 ml. dose was effective for about 4 hours.

It is ok to be sad about leaving this wonderful world, and we have to grieve at times. But I think it’s ok to carry on with life and do the things that make you happy while you can. I play piano and I knit and I do aqua fitness and spend time with family and friends and I want to do those things until I can’t anymore. 

But I was having my own pity party when I couldn’t swim on the first possible day back. And then I was inspired by a 30-year-old friend with ALS. Early  Sunday morning I read a blog post from Suuny Braus Erasmus who wrote about Franklin D. Roosevelt, who didn’t let paralysis from polio stop him from becoming the 32nd  President of the United States – which had been his goal before polio. Reading that gave me the kick in the ass I needed and I went to aqua fitness on Sunday morning at 8:45. For the first time I kept my napkin in my mouth the whole class and had to focus on nose breathing. It was not comfortable but I got the workout in and that feels good.

I am so inspired by so many younger people with ALS:

  • Sunny Brous Erasmus, diagnosed at age 28, met her husband at 29 and got married at 30 and blogs at sunnystrong.wordpress.com. She continually inspires me. 
  • Sarah Coglianese, diagnosed with ALS at age 33, who just won the Tradition of Excellence Alumni Award at Oak Park River Forest High School. She gave an impressive acceptance speech about empathy and how it could help many of the problems in this world. She has raised very large amounts of money for ALS research with her #whatwouldyougive campaign (which inspires empathy) and is a gifted writer who inspires ALS patients and others with her blog about ALS speed4sarah.com. Despite me being 18 years her senior, she is my mentor and friend. I went to OPRFHS with her aunt.
  • Corey Reich, who was diagnosed in college at age 21 and has raised lots and lots of money for research in his ten years with ALS and he is still a tennis coach at his high school.
  • Andrea Lytle Peet, who was diagnosed at age 34. She was a triathlete and she continues to compete in marathon races on her recumbent bike to raise money for ALS research and blogs at teamdrea.com
  • Osiel Mendoza, who was diagnosed in college at age 21 last year. He married his girlfriend a couple months ago – they have been a couple since 8th grade. He has already raised a lot of money for ALS research. He gave an inspiring speech at ALS TDI’s fundraiser in Boston a few weeks ago.
  • Eryn Criswell Blythe who was diagnosed at age 36 and has two young children. Her husband is her caregiver. She was pushed in her wheelchair in the L.A. Marathon last summer to raise money for research.
  • And Liz https://lizfeltham.wordpress.com and Cristian https://workandloveblog.wordpress.com are both younger than me I believe, and they both inspire me regularly.

These young people are taking what life has dealt them and are making the world a better place and moving forward with optimism. That is certainly enough to stop my 57 year old pity party!

The only picture this week is from Andy’s Cross Country banquet on Wednesday last week. He got a Varsity letter and he got a coaches award for his hard work and improvement. 

I am proud of him for working hard on running. Now he has to figure out how to keep his grades up while participating in a sport that takes so much time (practice 6 days a week). He wants to do track next semester but he will only be able to if he can bring his grades up this semester (family rule). He did it last spring to be able to compete in cross country so I think he can do it again if he can focus on school. Keeping him on track for track is a distraction too. Maybe all these young amazing people with ALS can inspire him too.
I don’t know when my ALS journey will end and I should be more hopeful since I am on the new drug Radicava, but the shorter days and allergy woes were bringing me down. At least we now know that I am probably not allergic to the Radicava since my symptoms have continued on the off cycle. And all I have to do is think of these young people with ALS and my personal pity parties will be over.


9 thoughts on “ Distraction vs Reality

  1. I’m sure you are as much an inspiration to all those people as they are to you. You inspired me to stop my own pity party for having the flu and missing Grace’s play over the weekend. Thanks, Meg. Keep on keepin’ on. xoxo

    Liked by 1 person

  2. Hi Meg,

    Yes as you said in your blog “The days are getting shorter”, reminding us until winter solstice on Dec.21. Then the day length will stand at 9 hours and 5 minutes, that is to say between the longest and shortest days of the year. Ipso facto that’s why we see poinsettias and Christmas cacti plants bloom when the nights are longer than the days. Which prompts me to think of you and Nevada’s sage brush, with my hope it’s not a long-night plant.

    Ever since you referenced to your major post nasal drip I’ve been able to relate, but in a much, much smaller, yet a breath-catching way, namely acute bronchitis. It was last May when my youngest, Mary, purposely had stayed over-night. It was at 3pm when we called 911. The mucus was stuck in my throat. My nose was dry as a desert. Thank God great care @ the hospital…then sent home after an exam & diagnosis with prescriptions: PROAIR HFA & also over-the-counter ones: Mucinex expectorant & Robitussin C+C Congestion. Once the Rx kicked-in and I’m not kidding, I then went through many more boxes of Kleenex than one roll of Scott Tissue over the next few days. Amen

    Please extend my my CONGRATS to Andy. A Varsity letter spells Achievement & Dedication. A coaches award spells Honor & Recognition. A few weeks ago I had the pleasure to cheer a Cross Country team with two of my grandchildren of son John and his wife Karen, namely Thea and Owen. Brings back good memories:: 4 years of college CC and 12 years of high school CC coaching. On both levels, college and high school, I found and saw the comradeship was special.

    Glad Stan has recovered from his ski injuries and is back on his feet. If I’m recalling correctly sounds like he’ll be also back on his skis sooner than later.

    *FYI:*Today I mailed a 3 page letter to Dr. Robert H. Brown, Chair and Professor at University of Massachusetts Medical School, Neurology Department.  Both the UMHospital and the UMMS are only 3 miles from my home i.e. Briarwood Continuing Care Retirement Community in Worcester. We have not yet met. I took the liberty to include your blog, which is the 2nd of the 3 page letter. Your blog’s Subject:[New post] My Aim is to Represent; Date: 10/2/2017 10:29 AM.

    Tomorrow I’ll send you by snail-mail a copy of the 3 page letter to 2215 Manzanita Lane, Reno, Nevada 89509. If your address needs editing please up-date me.

    Meg you are forever in my thoughts and prayers. God bless and comfort you

    Liked by 1 person

  3. Excited to see you all after thanksgiving.
    Kevin and I are coming out.
    Know that you are a shining example of positivity
    To us all! You are always in our prayers and thoughts.
    May God Bless you with your new therapy
    And please tell Andrew that we are so very proud of his. Accomplishments!!
    Love Kevin and LaVeta❤️

    Liked by 1 person

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