I am prompted by a post in one of our Gastroparesis support groups to share a story I might not normally share. I have made a conscious decision to refuse to live in fear because of this cruel disease, but, unfortunately, I have little control over my dreams (and perhaps my subconscious mind). So, last night, I found myself haunted by a nightmare in which I was left alone to care for myself and my young daughter after the passing of my husband. I do not normally dwell on such matters, but I must admit, I was impacted by this more than I would like.
In the dream, I was completely unhinged. I did not how to cope with my daughter’s feelings; nor did I have any idea how I would care for her. As it stands today, I am rarely able to leave my home and cannot participate in most of her activities. I am unable even to transport her to and from school. I have trouble completing the simplest of household chores and could not possibly pursue employment. I ran through our living arrangements and our financial situation in my mind and could see little hope. It was frightening.
This morning, in the light of day, fully awake, I can examine this with a clearer mind – but, though I am calmer, the outcome is essentially the same. I do not know how we would survive should this fate befall us. It is senseless to worry about “what-ifs” and panic about scenarios which might not soon occur, of course, and I do not permit myself to take this path, but I still must ask myself how I should prepare for this.
This is a scenario many in our groups do face – perhaps not death, per se, but coping alone, with no family members or friends to assist them. I read their stories daily, as this is not rare. This cruel disease robs us of our physical strength and endurance. We are nutritionally deprived, weak, fatigued, and must bear a whole host of debilitating symptoms such as nausea, vomiting, and pain. Managing this illness, even with the help of caring others, is problematic at best. I can only imagine the added difficulties that come with surviving alone. The physical hardships are many: lack of transportation (or simply the ability to drive) to medical appointments, stores, and social events; inability to adequately keep up with household chores; unemployment, underemployment, and lack of financial stability – generally accompanied by outstanding medical debt; and the inability to adequately care for their own medical needs – timely administration of medications, personal grooming routines, exercise, preparation of food, etc. It is no doubt nightmarish.
But what seems to me worse still is the mental anguish these souls must endure. The sheer loneliness and isolation many experience is beyond compare. Though we do our best to provide for their social needs in our online support groups, we pale as a substitute for genuine human contact – an embrace, a gentle touch, a soothing word at the end of the day. There is no one physically present to hold their hands and comfort them when they are weary and ill, receive disturbing news, or merely wish to celebrate and share a minor victory. There is no face-to-face conversation, no one to sit by their side, no gentle smiles directed toward them, and no words of encouragement, love, and adoration.
My heart breaks for these poor souls; I grieve for them as I do for those deceased. I beg you to remember the unfortunate ones, the kind beings who would give most anything for a moment of your time. The smallest of gestures on your part would mean the world to them. Open your hearts and give of yourselves: call, text, write, transport, visit, donate your time and money. Do anything – but not nothing. These people matter and they are counting on you.
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