Forty-six-year-old Martin Muiruri and 44-year-old Robai Musilivi-Muiruri understand too well the weight behind the vow ‘in sickness and in health.’ Martin lives with multiple sclerosis – a degenerative nerve condition. It’s been 10 years since the couple exchanged their vows and they have lived by them. They speak to ESTHER AKELLO on managing the condition, rising above the blues and why their commitment grows stronger every day.
How did you meet?
Martin: We met in late 2004. My sister, who at the time was at Catholic University of Eastern Africa (CUEA), invited me for a national university’s exhibition and later on introduced me to Robai. When I saw her, she was wearing a crown. My first thought was that she was definitely way out of my league.
Robai: I was Miss University at the time and I was part of the exhibit for CUEA. I couldn’t even remember him because I was greeting so many people!
So how did you end up together?
Martin: I had just been born-again and one of the things I had been praying for was a spouse. I knew she was the one when we met. So I told my sister to slip her my number.
Robai: Instead of giving me his number, she asked me to share mine with him. Thirty minutes later, he called me to arrange for a meeting. The only problem is on the material day, even though we were both at the same venue, we never met.
Martin: I suffer from Multiple Sclerosis (MS), a nerve disease that disrupts communication between the brain and the rest of the body and one of the effects is impaired vision so I never saw her.
Robai: By then, I wasn’t privy to this information and I also couldn’t remember how he looked like, so we passed each other. We made plans for a later meeting and that’s when I learnt about his MS condition.
How did you handle the revelation by Martin?
Robai: We discussed it extensively and I asked him a lot of questions. (Laughing) At that point I wasn’t really looking to settle down with anyone. Martin was just one ‘project’ among many. But I’m a prayerful woman and I pray for the people I come into contact with. As I was praying for Martin, I felt like he was the one. I had my doubts though. MS is rare and has no known cure. However, the more I researched about it, the more comfortable I became.
Were people in both your circles comfortable with Martin’s condition?
Martin: We set our wedding date four years away, and prayed and fasted about it. No one raised any objection and this was confirmation that we were on the right path. My family and relatives also used to tread carefully around me. I think they were never sure that I would have a full, normal life.
Robai: My parents were very supportive and categorically told me that if I was comfortable with Martin then they were okay. At the extended family and friendship levels, there were some murmurings. People pitied me for marrying a sick man and some even tried to talk me out of it.
How was your experience dealing with the disease in marriage?
Robai: I thank God for research. The kind of MS that Martin has is secondary progressive, meaning he plateaus for a while before an attack happens. So I haven’t seen him ‘degenerate’ as such aside from a relapse he had in 2010. The pain was so bad, he begged us to allow him to die. He’s also been nearly hit by cars several times while crossing the road because he can’t see properly.
Martin: I suffer from time to time from trigeminal neuralgia, that is an inflammation of the nerve stretching from the head to the jaw. Not everyone who has MS gets it but it has been described as one of the worst pains in the world and people commit suicide because of it. It can last for as long as three months. Those are the days I wish death would come easy, at the very least, to release Robai to continue with her life.
Robai: When the trigeminal neuralgia attack happens, Martin can’t do anything even eat. We have to blend his food. He can undergo surgery to kill the nerve but that means his face would drop, as there are no nerves holding the face together. There’s also no guarantee that the surgery would work.
How do you remain strong and optimistic as a couple?
Robai: Sometimes I go to the washroom and cry, especially when he’s in pain. I can’t afford to cry in front of him. I have a friend who is a counsellor and sometimes I just call her to exhale, talk or even cry. My mum and some two particular friends have also been very supportive.
Martin: Sometimes you have highs and lows. Dealing with MS can make one feel so low because as a man, it means you can’t do much with regard to providing for your family and so on.
Robai: Most times, however, I forget that Martin has MS because he is so optimistic and has consistently shown me that he is still human and can function just like us. Sometimes he feels bad about that and we even fight about it.
Martin: (Jokingly) She treats me like a brick! Pick your cane, wash, iron! Struggle through it! But for people like me, it is easy to fall into a pity party. The fact that she hasn’t let me fall into self-pity, keeps me going. I also pray a lot.
Robai: You also develop thick skin. There are times he has had bathroom accidents and I have had to walk into the men’s room to help him clean himself up. When we travel long distances, Martin can’t eat. His bowel system is such that when he has to go to the bathroom, he has to go; so we avoid precarious situations.
Does it affect your sex life?
Martin: Yes. I have suffered from erectile dysfunction on some occasions. The series of drugs that I take can also take their toll. In those moments, we take a break from sexual activity.
Robai: Other times though, he’s back full swing! When we were getting married, we knew this could potentially happen. So we came up with ways to handle it.
How do you balance financially?
Martin: Our families have come through for us in a big way. I had to quit formal employment when the symptoms of MS, such as violent shaking or sometimes falling became too much. I currently work for my dad as the front office manager. Some days are good, some days I’m even too fatigued to get out of bed, let alone shower.
Robai: I also quit formal employment in 2011 and became a stay-at-home mum. I started my own crafts and training company – Roma Crafting School. My income is sporadic but it helps. Medical bills can be as steep as Ksh92,000 a month and those are just injections for six months. He needs pills, knee support, leg brace, and physiotherapy just to mention a few. Most insurance companies don’t want anything to do with him, but God has always to come through for us.
Martin: I’ve also authored a few children’s book and I’ve also invented a board game (Sozo) registered by the government. Sozo means salvation in Greek and it’s a board game that engages children in knowing more about the Bible.
What have been some key foundational principles that you believe has helped your marriage thrive?
Robai: Definitely the foundation we started with, that is prayer, fasting, and setting boundaries. In fact, remembering that we stayed four years without being intimate when we were courting helps with the seasons where intimacy is a steep hill to climb.
Martin: We’ve also always been open to each other.
You are adoptive parents. Is it intentional?
Robai: Yes. We discussed it long before we were married. We are yet to have one of our own but hopefully in future. So far doctors say there’s nothing medically preventing us from having children even though I suffered from fibroids before they were surgically removed.
Martin: Initially, it was hard on Robai when she realised that she wasn’t getting pregnant, but eventually, we decided not to put pressure on ourselves.
Was adopting your children a hard process?
Robai: Our first-born, eight-year-old Hazzel is a foster child, meaning we take care of her, but we haven’t officially adopted her. She came to us at six months through relatives. She is aware that she has two sets of parents.
Martin: Of course there are challenges. Sometimes people have reminded us that she is not our own and that we need to have one of our own. Our second-born is one-and-a-half-year-old Raziella, and we are in the process of formally adopting her.
Robai: We do plan to tell Raziella, when she is old enough to understand that she is adopted. In the event she wants to look for her birth parents, then we will support her 100 per cent.
How do you talk to your children about the condition that Martin suffers from?
Robai: We aim to protect them, but not necessarily shield them. We, therefore, tell Hazzel in small doses about MS and in a manner that is relatable.
Martin: We also belong to the Multiple Sclerosis Society of Kenya and we hope to establish a support group for children.
So how do you keep yourselves excited about your marriage?
Robai: (Laughing) Martin’s romantic. He wrote a Swahili song for our wedding and one of our friends, Linda Orocha, sang it. He also surprises me with a lot of sporadic gifts. The only problem is I don’t like surprises.
Martin: I pray for my wife and children and bless them everyday or at least try to. There’s a family motto that we have called IWALY (pronounced I-wal-yi), which means, ‘I Will Always Love You’ – God first, my wife, and then my children, in that order. We even made it into a plaque.
How would you advice other couples who have a partner with an incurable medical condition?
Robai: Count the cost. Read a lot and be sure that this is honestly something you are ready to cope with. Sometimes the challenge of standing by your partner may happen after you’ve already tied the knot. Talk to God as well. We made the resolution that we were not getting married to divorce. We are in it to stay and we continue to pray that God will help us.
Martin: Communication is key. Always remember the human face of the condition. Love your partner for who they are, their personality and not because you pity them. I believe for any relationship to prosper, God has to be in it. So, put God first.