In desperate quest for a cure to my Sickle Cell Disease (SCD) some years ago, I stumbled on the bone marrow transplant as a solution to SCD; this method would usually involve chemotherapy at a stage. I imagined it would be a tortuously painful process. Somehow each time the thought crossed my mind, peace eluded me. I resolved to stick to living with the SCD instead of putting myself through unfamiliar stress or letting anyone gamble with my life. For me, SCD was enough gambling; a pain free week almost seemed like a luxury. I know each new day comes with its own blessings as well as hurdles to cross, so I remain thankful.
On 29th October, 2015, I received quite a number of text messages, emails and calls from family and friends, informing me, and somewhat congratulating me on the permanent cure for SCD without chemotherapy; an assumed less painful process using stem cells from a healthy sibling. I was amazed as I only received this much attention on my birthday so I guess it was another birthday for me; only, one I wasn’t too excited about. So far in my life, it seemed this was what I’d term, the best news ever; at least, at that moment, that’s how everyone made me feel.
Despite the massive excitements that filled the air, I was shocked at myself. All I had were mixed feelings. Instead of reveling in this new liberating information, my mind was flooded with questions whose answers I might never ponder long enough to find. Has this new method worked for anyone yet? How successful has it been? Is it life threatening? Will it bring about more complications in the end? What are its side effects? How serious will these be? How does one access the treatment? What is the estimated cost involved? What if there are no siblings whose stem cells can be used? Can any other person be a donor? As it is often done in our society, do the wealthy kids also come first if there has to be some kind of protocol for this treatment? When the stem cell transplant and the whole process is complete, the patient will have to be placed on some immunosuppressive medications for at least a year or even for life. These medications actually break down the efficacy of the immune system, rendering the patient susceptible to all forms of infections.
After giving this whole new process some thought, I decided to look at the bright side. With this new cure, SCD might be completely eradicated someday. It means SCD is not completely forgotten by the national, and even the international policy makers. It means we have people out there still fighting for a remedy to SCD. It means we can laugh heartily and genuinely someday, and live totally crisis-free. It means we should never throw in the towel, we need to fight on and keep on the faith because there is a breath of fresh air. I get excited when I think of the new process in this manner and I am resolved to keeping my hope alive. Yes, there might finally be a cure for SCD.
Life’s storms can hit you so hard you’d begin to wonder how you still making it through. I have lived my years as a Sickle Cell patient but in these genes, thankfully, I have had a relatively healthy period as compared to a few other patients I have met in my journey through life. As the bible says, there is time for everything; the worst storm of my life, began in March 2014 and has seemingly refused to calm down till now. I have never been excited to read d book of Job, in fact it is one book I often intentionally skip when I have to glance through the bible. However, lately I summoned up courage and began reading it.
But why Job? Yes, Job, because I have gotten to a point in life where I feel God is so far away from me, where I feel I am struggling to get Him to hear me, where I feel everything is literarily collapsing on me…these times I am tempted to sing “things fall apart” instead of “you are the pillar that holds my life”.
Today, I began asking myself some salient questions… Why is it so easy for me to praise God when things are going on well with me? Why do I expect Him to forget about His timing which is surely the best for me, and follow mine now so I feel no more pain? Why does my faith seem so strong when my heart is merry and melt when I see the mountain?
Now even in my pain, I am resolved to praise because only a God that’s mighty can boast of knowing me before I was formed in my mother’s womb…and He sure does! And that’s what holds my faith in Him.
I am allergic to pity so I don’t entertain it; I am not sorrowful, neither am I brooding. When I write these things, I simply hope and pray it is an encouragement to someone in stormy time like mine. I pray I am strengthened to keep praising Him instead of complaining. Am still wondering what you do with your pains?
On 3rd November, 2015, I received the most shocking news of my life. I sat there looking steadily at the Nephrologist as he told me I was at the end stage of a Chronic Kidney Disease (CKD). I couldn’t quite believe this because just the other day I was diagnosed with CKD, how come it is already at the end stage when there are five stages? I sat bewildered, tears welled up in my eyes as he offered me the very scanty options available for me to survive. As much as I tried to hold back the tears, I felt them streaming down my face, hot and very salty as they touched my lips. At this point, I had lost all of my faith, I could not think of anything. All I could think of was the seeming horror I had just discovered. I was drowned in fear. As I walked out of the clinic, I cried bitterly. I heard my friend’s voice like an echo, far away yet so close; saying, “Hold on Debbie, all will be well”. I couldn’t see how all was going to be well. For me, it was like the beginning of a journey of no return. Forgive me for sounding this pessimistic.
As we drove home, I called to inform my two sisters and my mum of the sad yet important news and of course they began informing family and friends; everyone they could possibly talk to at that time. Everyone who had not touched base with me in years began to reach out somehow; so many calls, texts, emails etc. Interestingly, everyone seemed to have a preferred solution to my latest challenge; both medically, spiritually, psychologically, physically and every way I could imagine. Everyone wanted to be there for me. Some even took it upon themselves to call me every day for prayers. I was simply overwhelmed with care. All of these, I sincerely appreciate.
After the stage of shock, I got to the acceptance stage. It then occurred to me that I had spoken to every other person except one, my creator, The One who formed me and knew me perfectly well. I felt all the more depressed. I dint know where to start from. I was very embarrassed. I was sorry and sad that I had to speak to Him last. Yes, He should have been the very first. I remembered some of my childhood Sunday school teachings, “those who call on Him will be saved”; “He is my present help in times of trouble”. Mama often told us, “He always listens, so just call Him and have faith”. So I summoned up the courage. I cried, I prayed, I reminded Him of some of His words which I knew, and had kept safe in my heart for trying times like this. I didn’t still get a feedback from Him after all these, but deep within me, I know He heard me, He always did. I thought about other times in my life when I needed Him, and He showed up for me; so I know He won’t leave me now. I have that inner peace.
At this point, living with both Sickle Cell Disease (SCD) and CKD, doesn’t matter anymore. I just don’t want to brood over what the doctors have to say about my life and miss the fun times I can still have. I am done fretting, though I feel some inner fear every now and then, especially when there is a strange pain, prolonged flu, bloated tommy or an extremely depressed feeling. For me, waking up every day means that God has not finished with me. Despite all the pain and discomfort, I am thankful for life. I am taking one day at a time and finally growing to accept that whatever you believe and constantly process in your mind, is what truly works for you so I am staying positive. I often feel that I am holding on to my last drop of faith but who knows, that is just the drop of faith I need to see me through. If you are reading this, please say a little prayer for me 🙂
`I laugh NOT because the jokes are that interesting, but because the uncountable tears I have shed keep me thankful for every second I can laugh.
I smile NOT because I don’t have cares and burdens that tend to weigh down my mind, but because I know what I feel when I receive a smile.
I am excited NOT because I have some great news, but because even in these genes filled with pain, I choose to appreciate a world filled with beauty.
Yes I choose to assess my crisis as a source of my strength rather than get drowned by it.
You do NOT feel my pain but if you look into these eyes, you will see why I laugh, why I smile, why my excitement is uncontrollable.
I am a warrior; I live to fight and fight to live