This morning I wrote a short post noting the fragility of my state after a horrific migraine stormed through me yesterday. It has been a very long time since I have felt such absence of hope.
While driving to my neurologist’s office I talked to God. I was not yelling or even crying, I was just matter of fact telling God that this is too much; the ongoing fight for health and the relentless migraines. I reminded Him (like He needs my memory cues)….I did it anyway, I reminded Him of the verses in the Bible regarding hope; of our need to have hope to in order to live. I asked Him for hope. I told Him that in order to continue, to keep breathing, I needed hope.
What you don’t know is that in addition to a “profound onset” of chron’s when I was 29, I was diagnosed with leukemia when I was 34. And that is another very long story for a different post or an entirely different page. What matters in relation to this post and to my despair this morning is that I have fought, tooth and nail, for health. God has blessed me with remission and if you met me or saw me on a street, you would never guess that I have a really complicated medical history. These years, the recent years of remission are redeeming and I love resting in health again. However, the memories of the horrific pain, isolation, fear, utter despair, and unspeakable sadness that I lived through during my 30’s are very real. And when I am trying as hard as a person can try to do the things I need to do in order to stay healthy—only to be knocked down by relentless migraines— It can be just too much.
I parked in the deck and walked, with a heavy heart, toward the elevators. While I was in an elevator, a woman and her husband were lost and trying to figure out which button would take them to the ground floor. I helped them find the right stop. The woman was frustrated and told me that I should “try coming here year after year for almost 30 years and realize how hard it is to keep up with a hospital that is constantly growing, expanding, adding buildings”.
I acknowledged her frustration and said that I understand (and I do, I have been going to that hospital for 14 years, my doctors have very important titles and they address very scary words and diseases; their offices have changed and moved over the years—so I do understand the frustration she was speaking of). My acknowledgment was not an attempt to compare stories or to make a friend, it was just a muttered “I understand” in hopes to silence her. Maybe the woman was also having a day devoid of hope; I do not know the details. I do know that she looked at me, glanced at my jewelry and used a sarcastic tone while she told me (again) that I should “try it for 30 years”.
As silly as this sounds, I wanted to stand up to her and explain that while I am younger and do not look like I have struggled, I have actually fought bravely and often with a broken heart. I wanted her to respect my space just as I was respecting her space. I wanted to tell her that I know what it is to find solace in your favorite chair at the oncologist’s office, only to have them build a new building (and never offer that favorite sunny spot chair again); I have learned that when you are admitted, regardless of the floor or unit, the framed poster across from your hospital bed is always the same cheesy palm tree/beach scene (actually, I don’t know about the maternity ward because that is the one joyful experience I will never have at a hospital due to a complicated medical history).
So, yes, I understand how hard it is when the markers of routine in our hospital visits change. I did not say anything else.
While waiting in the neurology lobby, I sent a group text to my husband, parents, sister requesting prayer. I could tell by their replies that they realized how deeply I was hurting and I knew that they would pray for me. After my name was called, I followed a young woman down the hall and into a room set up with tiny vials that the doctor would use to administer my botox migraine treatment.
That is when it happened, my moment of hope appeared on the counter top near the sink (no, not when I saw the vials). I saw that the doctor had stacked magazines on the counter top titled “Guide to living well with Migraine Headaches”. The phrases “Take Control” and “I’m fighting back against Chronic Migraine!” jumped off the cover as I picked up a copy of the magazine. I felt it, just like that, God gave me some courageous phrases alongside a serene picture of a woman who has found a way around life with migraines. The exact same thing happened to me when I was 34 and my father took me for a pre-dawn bone marrow biopsy to determine if I was responding to chemotherapy. That day, 8 years ago, I was terrified, hurting badly and hope had abandoned me. While we were waiting for my procedure, I saw a magazine with a beautiful young woman who had the same type of leukemia I had. I read the article and learned that she had reached remission and had married. I literally slept with that story under my pillow every night for a month. This time around, I don’t need to sleep with the story under my pillow for strength. However, I have it beside my computer and have felt the corners of my heart turn upwards when I glance at it. God is so creative when He speaks to us, He knew exactly how to send hope in a meaningful way to me exactly when I needed it. And it worked, I am back in the game.