“The warm embrace of solitude, is an illusion. It falsely shields you from the life you deny yourself and your loved ones.” TJO

This one may ruffle a few feathers, but I believe it needs to be shared. However, I will reiterate that what I write is my personal perspective.

Choosing to isolate yourself when diagnosed with ALS can be very comforting to you. By shielding you from scrutiny, pity and discomfort, but does it really? All of these can and do take place, whether you step out of your home or not. How does this help your loved ones? Do you believe that you are alleviating the burden of your care? Reducing the stress on them, avoiding uncomfortable situations? Possibly, but to what point? Have you asked your family how they feel, or did you just assume it’s for the best? I have had many conversations with family members and caregivers regarding this. The general consensus is that most don’t see it as a burden, but are willing to do just about anything to continue living… with you included, especially “with” you!

Let me ask you this, what did you do prior to ALS, for enjoyment that is? Why can’t you do some of them, not all, but some of them, now. Yes, there are limitations and logistical challenges to consider. But what if those can be mitigated and overcome with good planning and the willingness to get it done by your support. Would you change your mind and take a chance, a chance to live again, in spite of ALS? A proverbial middle finger to the condition! Imagine how your loved ones would feel. To have you there, present, with them. Believe me, even if it isn’t spoken, you will see it in their eyes. Why be absent from their lives now? Don’t give ALS the time you can give to your family, friends and yourself. That time will come, not just for us with ALS, but for each of us.

I’m not insensitive to the fact that many simply cannot move past this point of feeling anchored to a single moment. The moment when one is made aware of what will be the cause of our death. Let’s not tip toe around the fact that ALS fatal. Regardless, you don’t cease to exist the moment the diagnosis is rendered. What then if you simply can’t move on?

For you I explore you to seek professional help. I did, and it helped me break through a very difficult time in my life with ALS. Yes I believed that I could work through it on my own, but I was wrong. Once I made the decision to ask for counseling, at the request of my wife, I immediately felt that I could breath again. My concerns were not related to my isolation or depression, but had I not sought help it could have progressed to both. Making it much harder to get off that hamster wheel. also.

Again I implore you to seek professional mental health services, most ALS clinics have this incorporated. There has been an increased focus on mental health of not just ALS patients, but their families and caregivers also.

ALS takes so much, literally everything, please don’t give it what precious time you have remaining, and that of your loved ones. No you don’t have to embark on epic adventures. Trust me, your family and friends would be happy to just sit outside with you. If you have the means to actually venture out further, do it! Once you do, you might surprise yourselves. I assure you, your family will love having you there. Don’t hide your pain by hiding away from your life. Your loved ones may not say it, out of concrete concern to stress you, but they are also hurting. They are already mourning you and the life you intended, knowing the eventuality. Please, please, please don’t deny them time with you, while LIVING!

Here is a link to resources if needed: https://www.nimh.nih.gov/health/find-help

Lastly I will say that I am not a professional, I am just sharing my experience and that of others living with ALS. So always discuss with your health care team any needs or concerns you and your family encounter.

TJO