Sickle Cell Warriors

Articles

 Breaking News

Love Overcomes Sickle Cell: Meet Linda & Steve

Getty Images

Love Overcomes Sickle Cell: Meet Linda & Steve

I’m not a warrior but I’m a warrior wife, so I’ve been on the other side of your story. I hope that this gives you hope and courage to face whatever relationship hurdles you are going through. My story is almost something out of a Nigerian movie, but this is a true story. My true story.

I have known my husband for 21 years, we grew up as friends and neighbors. We had a fairly typical relationship. Everything was going well until my fiance decided to ask my father for my hand in marriage. It was like a switch flipped. My father made his life (and mine) a living hell. He kept saying no but not once did he give a clear reason why. I later pieced it together and realized it’s because my husband (then boyfriend) had sickle cell disease (SCD).

My husband had told me about his condition earlier on while we were dating and I accepted it. He asked me to get tested with the hemoglobin electrophoresis test. He said categorically that he would never want to put his children through what he went through. Conceiving naturally would have never been an option for us if I turned out to be AS. We would have looked into adoption or pre-implantation genetic diagnosis (PGD), even though it’s expensive. With PGD in a nutshell, eggs are harvested and fertilized with sperm using IVF. The embryos are tested for sickle cell disease. Only those that are negative (AS or AA) are implanted into the womb for pregnancy to continue as normal. Blessedly, my test showed that I was AA.

I did not feel the need to tell my family about his sickle cell because to me it was like having asthma, hypertension or whatever other chronic disease. It didn’t matter to me because I loved him wholeheartedly. The fear of death was a non-issue because everyone will die sooner or later. You can have a perfectly healthy partner die in a car accident or some other tragedy, so that has never scared me. Somehow my family eventually found out. Never once have they talked about it openly, it’s a taboo to talk about SCD in my family. Everybody knows my husband has it but they never openly talk about it.

My dad casually announced during my graduation party that’s his “intelligent daughter who is a doctor had decided she wanted to get married instead of being a doctor and she had chosen to marry a sickler.” I couldn’t believe he said that to everyone.  That moment is when lines were drawn. I HATE HATE HATE the word ‘sickler.’ To me it’s so demeaning!

I sat my parents down and told them how and what I felt. Told them I was extremely DISAPPOINTED in them. That despite their education they had decided there was nothing more to a person other than their genetic makeup. Here they were, sitting in judgement high and mighty as if they had any hand in making sure my siblings and I did not suffer from any GENETIC medical condition. Congratulations to you for working so hard to have awesome genes, I said sarcastically. I told them I had made up my mind and if I were to regret the decision down the line, at least it was my choice. My life, my choice.

! If the roles were reversed and I was a warrior, I’d want to be loved the way that I love him. I’d want to be treated well, the way I treat him. In all this my husband (then boyfriend) had asked me several times to just leave him because it was not worth the drama with my family. Even his siblings had asked him to leave me joking that it’s not his SCD that will kill him, it’s my crazy dad!

Fast forward to my wedding day, my dad RUINED the day…we never got married. Yes, I was that bride, standing at the altar in shock. My father had issued a warrant of arrest for my fiance for ‘abducting me.’  He was going to have my fiancé arrested on my wedding day. And then my dad pointed a gun to his head. On my wedding day! After that, I did not talk to my dad for 2 years.

We got married later in a private ceremony at the justice of the peace- with just 2 of our closest friends present. It was an intimate ceremony full of love and respect, and I’m so happy that we finally were able to be husband and wife. We started our lives together, and I decided then to separate from my family of origin, choosing to leave and cleave with my husband as it should be.

During the 2 years we were not talking to my family, I sought counseling from my pastor. I was very busy with grad school and needed peace of mind. I was very bitter, angry, and in a dark place. My pastor was able to help me process all those emotions and find peace in my heart.

Anyway, years down the line, my family finally realized that once my mind is made up there’s no turning back. Most importantly they reflected and realized that my husband’s only ‘crime’ is that he was born with a genetic illness. I got my siblings to apologize to my husband for all the drama. My parents have not apologized and I know they will not, because they are stuck in their ways. At least now they recognize him and embrace him as their son-in-law. Funny enough, now they are the ones pressuring us to have the wedding that they ruined.

Was the fight with my family worth it for me? Absolutely! I have a husband who loves me FIERCELY and treats me well. If he were to precede me in death, the way I will eulogize him is by his UNWAVERING love for me, 9 years into our marriage. I’m also convinced he’s the best father in the world, he’s even a better parent to our son than I am. He’s still my best friend and my life partner. I have a mother-in-law who ADORES me because she knows I love her son. And that I fought through crap, hell, and high water just to be with him.

Don’t get me wrong; our marriage is not just a bed of roses. Especially in this generation where marriage has even more challenges. As with any marriage, there are peaks and valleys. We are not immune to the usual struggles that couples face. There is always a compromise. But all those other issues pale in comparison to the drama my family caused. To me, dealing with my family, that was the hardest part.

Of course it’s tough being married to a warrior and taking care of him when he’s sick. Also, I love the outdoors and hiking which he cannot do. I like to go out and dance which we cannot do as frequently as I like. We both love traveling and have been to almost every country in Europe. We have figured out how to make our lives work with his sickle cell.

I have amazing girlfriends who keep me sane and accompany me to my hikes and other activities which could trigger my husband into a crisis. He doesn’t stop me from living my life, he’s not an inconvenience, he is my life partner. I cherish every single moment that I have with him. I strongly believe there is someone out there for everyone. If you haven’t found him or her yet, you are better off happy alone than with someone who does not accept you or love you unconditionally.

 

Related posts:

About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

Related Articles

0 Comments

No Comments Yet!

There are no comments at the moment, do you want to add one?

Write a comment

Write a Comment

Donate

Support awareness & education for SCD

Announcements

Sickle Cell PSA

From CT Sickle Cell Org---my favorite SCD PSA.

Join the Sickle Cell Warriors Database

Become a warrior. Sign up to be a team leader/member. Get contacted directly by SCW about events and research in your area. YOUR INFORMATION WILL NOT BE SHARED/SOLD TO ANY THIRD PARTIES. (See privacy policy)
Example SS, SC, Beta Thal, Monroe, etc.
You will receive pre-screened research opportunities on sickle cell disease
You will receive info about the sessions on the advocacy training classes
Read more here: http://sicklecellwarriors.com/classes/
* = required field
Interested in local meetups?




powered by MailChimp!

Join us on Facebook!

Archives

Tweets!

have data = false

This is a demo store for testing purposes — no orders shall be fulfilled. Dismiss