A beloved 29-year-old friend is currently breathing her final breaths under Hospice care in my town. Three years ago, she was diagnosed with gastropresis. We connected shortly after I had my feeding tube placed last year. Our paths converged because of shared rare diagnosis, shared medical machinery, and shared geographic location. Now her friends and family are saying their final goodbyes as she sleeps her way into eternity.
They had hoped that the treatments would be effective, but she has fought long and valiantly, and she’s tired.
They had hoped, but….
I don’t have cancer. I am not immediately dying. In fact, I’ve enjoyed a relatively stable month, give or take a few days. Yesterday, however, my daughter asked me if I was going to die soon, and I had no idea how to respond.
We are all terminal. No one is promised tomorrow. With that being said, I’m feeling a little bit more terminal than the average thirty-something mommy of littles.
When I heard the news of my friend’s descent to palliative care, I wept for several hours. Grief, terror, and rage swept through my whole being as I processed an extremely tragic and untimely death.
Worst-case scenarios assailed my mind:
I am going to die of a disease that many doctors are unwilling to even acknowledge.
I’m not going to make it to see my children go to their first dances or walk down the aisle for their weddings.
I’m never going to grow old with Jordan.
This is it. I’m never going to recover. We will exhaust all of our options, just as my friend did. There is no magic cure. This illness will end in death, and it will be an untimely death.
I am scared. I am tired. I am working desperately strenuously trying to live a “normal-ish” life, trying to give my family a joyful, healthy life. Maintaining survival with a half-dozen chronic illnesses is a full-time job. Parenting two preschoolers is a full-time job. Supporting a spouse in dynamic ministry in an unstable denomination is a full-time job.
If I were to honor the true demands of my body, I would stay in bed for the majority of the day.
My spirit and mind, however, are flailing around, desperately grasping for life-giving activity and passions. I go through my days trying to out-smart my body, tricking it into thinking that it is well enough to engage in activities that I love with people that I love.
In the paper-thin moments when I stop pushing, when the symptom-managing meds wear off, I feel the pain, fatigue, and ravaging illness creeping into my consciousness, and I stand exposed, vulnerable to the reality of my weak, broken flesh.
The spirit is willing, hungry, and passionate, but the flesh is so pathetically weak.
So here I stand, shaking, with the scary awareness that I am possibly terminal and definitely sick.
Every healthier day is a gift. Every sicker day in bed is an opportunity to suffer with Christ. I don’t know what to tell my children when they question the integrity of my physiognomy.
Yesterday I began a new treatment for the Mast Cell disease. We had to jump through about ten insurance loopholes to get it approved. It’s an injection made from some sort of hamster byproduct that somehow stabilizes allergic reactions and asthma for some people. (Medicine is NUTS). I sat in the infusion center for an hour so that they could monitor me for an allergic reaction to a medication that is supposed to reduce allergic reactions.
It’s an ironic life when you are allergic to your allergy medicines. I am allergic to at least four allergy medications so far.
On Thursday, my surgeon removed my port in my chest after trying to make saline infusions work for about two years. Many people celebrate the removal of implanted devices. It means that their treatment is over, and hopefully successful. We removed my port with something more akin to a spirit of resignation.
We had hoped that the infusions would help, but my body interpreted them as attacks, and it revolted as a result of the foreign fluids flowing through my veins.
We had hoped that my feeding tube would allow me to get more nutrition in, but we never could find a formula that did not destroy my stomach and leave me clawing my way out of another allergic reaction.
We had hoped that the beta blockers, the steroids, the Mast Cell stabilizers, the histamine blockers, and all of the other pharmaceutical interventions would fix my symptoms, but my body rejected so many of them as well.
We had hoped….
We had hoped….
And once again we return to the drawing board, praying that there is another option. We are not ready to give up. Giving up isn’t even on the horizon.
We hold onto hope against hope that I have more options, that tomorrow will be a better day, that this debilitating fatigue that hangs on the tails of my xolair injection yesterday will dissolve into greater symptom reduction and result in remarkable recovery.
We hold onto hope that my body starts tolerating more food, that I can maintain proper body temperature, that my GI track will start working, that my body will stop seeing the world as the enemy, that my heart and I can make friends, and that the more stable summer months sustain me through the brutal concentration camp of winter.
We hold onto hope that the joy of living outweighs the agony of the physical suffering.
I discover hope buried in the relief from suffering, and hope surprises me in the darkest depths of suffering. I ultimately believe that hope will spring forth when we discover that the worst thing (death) is not the final thing, but actually the first real thing of resurrection life.
Hope is in my friend’s room in hospice tonight as she sleeps cradled in the love of her family and friends.
Hope is spread wide across the faces of the motherly nurses who care deeply for patients at the infusion center at Wesley Hospital.
Hope is in the husband that weeps for the loss of 50 years of marriage that was stolen from him, but revels in the glory of walking with his young wife through the valley of the shadow.
Hope is in the promise of miracles, though the miracles that we are given might not be the ones that we initially sought after.
Hope in packaged in the unlikely margins of life, in the places where we are spent, poured out, used up, and humbled on our bruised and bloodied knees.
Hope is abundant, and our terminal state merely represents a semi-colon. As we unwrap life circumstances that we never asked for, we find hope in the most unlikely places.