Wheelchair-ing in Africa - Day 1

 

Happy to leave, in the airport

We started planning this trip right after our wedding. My life long dream, to visit Africa, was starting taking shape.

We chose month of May, although during this period, in Africa is winter time. Our initial purpose was to see animals in the safari, and May it's a good month for that. Also, we wanted to avoid crowing.

It was perfect!

Winter temperatures during winter in Africa are aprox. 61-68F/ 16-20C max, and 39-45F/ 4-7C min. We usually had around 20C, also because it's May, and just the beginning of winter. The coldest time was in safari. The two games we had were in the evening, right before getting dark, and next morning, at 6.30 AM. Fortunately, they gave us blankets!

Evening safari

Luckily for us, few days rained and was cloudy, and only short showers during the day. Lucky for us but not so good for them, as they are currently confronting with a water crisis. The water consumption is being rationalized everywhere, from domestic use to restaurants and public institutions.
 

We were both freezing on the morning safari

So our adventure started on April 30th, in the airplane. I had chosen two seats on a row of 3, the one in the middle and next to the window. I usually prefer to get the seat next to the corridor, to have space to stretch my legs, but Ionuț loves to look on the window during the flight, so I told myself that probably we won't be back soon to Capetown and it would be nice to see it from above. 

Missed the fact that we will be traveling during the  night. And because my legs started twitching (MS related spasms) we switched places, to make sure I won't hit the guy standing next to me.

Anyway, there was nothing to see for Ionuț on the window. Night. And a lot of ocean. 

The person who sat next to me, on the seat next to the corridor, seemed to me a 40 year old man... not quite sociable. He came, he sat. No "Hi!", no eye contact, nothing.

Later, I got up and made few steps and met him on that part of the plane where there is more space. He was speaking English. I assumed that he was from London, where we had a layoff, so I imagined he just got in the plane. 

But no. We started talking and found out that he flew from San Francisco, with a layoff in London, going to Capetown! No wonder he didn't feel like eye-contact after so many hours of flying!

Later, him and Ionuț were aleady exchanging contacts, he was showing us pictures with his wife and two (gorgeous) kids, we were talking about parenting , psychology and traveling.

I was also wrong about his age. Especially Ionuț, who thought he was about 35. He was actually 51! When we asked him how come he looks much younger, he explained that he always did sports. More than this, his wife finished two Iron Man competitions (sport contest that consists in swimming, running and cycling for long distances). 

We said goodbye with a promise to visit him and his wife in San Francisco.

 

Table Mountain view

After eleven long and uncomfortable hours of flying, we landed. It was morning. Finally, we could enjoy the long-expected landscape: Capetown, seen from above, is spectacular! Table Mountain image, seen from the plane, almost made the eleven hours on the British Airways uncomfortable chairs worthwhile. Almost.

Later on, we got here

Although I had only slept the entire flight one hour, from 8 to 9 AM, when we landed I got so energetic! So I befriended fast with Bernice, a South African woman from the airport disability service, who accompanied us to the rental car company. She said she will look for us on May 15th, when we had our return flight, to tell her how was our vacation. Unfortunately, we never did see her again, seems it was not her shift. But our stay in South Africa confirmed what Bernice transmitted: Africa people are fantastic! 

In this first day, nothing special happened... we were so tired after the flight. We only went to eat in the evening in a near by restaurant, where we befriended Jadene, Cerilia and Philippe, one of the waitresses and the two managers of Roco Mamas (the one in Buitenkant street, where we stayed in Capetown). As they were just next to our accommodation, we visited them in other occasions also.
It's a wings-ribs and burgers restaurant, with very good food and a lovely young team. The fact that they were our first contact with South Africa, young people always smiling, dancing in the restaurant and asking us every two minutes if we are ok, gave us confidence on our South-African experience to come. More than this, because we were a bit insecure when we got back to our accommodation after dark, Philippe, one of the managers (measuring 2 meters I think ha!), accompanied us to our building.
Later, we were more relaxed, especially after we found out that the area is quite secure, with the Police Department near by.

My first conclusion at the beginning of our trip: maybe I am not so unsociable as I thought!
But more important, what I can say now, after two weeks in South Africa, is the fact that my life would definitely be easier in a wheelchair if I moved to Cape Town!

In the following blog posts, more about this and our south african experiences!

Love,

Florența

I love you

I wrote a great deal about my mother. After her death, this was my way of somehow, keeping the relation with her. A dialogue. With her, with me.

I wrote about things I would have like telling her, and I never got to, or maybe things I've said but perhaps I would have preferred to say in another way. I wrote to organise my thoughts, or to simply feel I "download" everything on a piece of paper, who doesn't judge me, and could never made me feel embarrassed to cry.

I considered it a therapeutic process. We all need to grieve after loosing someone so important, we need to express our feelings, and perhaps the worse thing we can do is to "get over it", without feeling the sadness, the loss, and to give our soul and body the chance to recover naturally. The truth is some voids can never be filled...

My mom never used to cry. I can isolate few events when I saw her crying. The most painful one - and the last time, when she wasn't conscious anymore, on the hospital bed, a day before she died. 

I visited her twice that day at the hospital. She wasn't conscious nor in the morning, nor the afternoon. She was asleep. But she had tears under her eyes, which I haven't noticed initially. When I saw them, I started crying. I left her in the morning hoping I will find her awake when I will return in the afternoon. But when I did, she was also asleep.

The next day, I was at the office when I receive the call.

When I was diagnosed, she was looking at me frightened, as if she was waiting any minute for me to react somehow...to start crying. For her, this was the worse thing possible. She would always say "Don't cry!". When I was sad, she would have done anything to make me smile again. I integrated, of course, this behavior, for many years. After a lot of individual psychotherapy work, I understood that it's ok to feel. It's ok to allow yourself to feel whatever you feel, and by denying whichever feeling one will only remove it from awareness. It will kick back in with the first trigger that will remind of the painful situation - The Repression.

Regarding my disease, we never talked too much about it. That involved emotional moments, and we wouldn't allow ourselves crying in the presence of another. Especially when my symptoms worsened. 

At the psychology training course I am attending once a month, there was a specific moment which scattered me. One of my colleagues in the training group, herself a mother,  was passing trough a similar situation: her daughter had gotten sick and apparently, the cause was unknown. Her distress, so real, her pain as a mother, reminded me of my mom's unexpressed pain. The pain which appeared in some key moments, surprising me as it was always unexpected. As it was one day at the hospital in neurology section, when as I was facing new, strange symptoms, she practically begged the Doctor, with tears in her eyes, to tell her where she could go, where she could take me, abroad maybe, anywhere to heal my disease (the Doctor's answer was a typical Roumanian Doctor, which I don't even want to mention, but funny I remember after...twelve years?).

Her unvoiced pain, which almost all the time hidden in the unconscious, was manifesting unexpectedly.

However, noticing the pain, a mother's panic in our training group, I got to be aware of my mother's pain, which she would have felt when I was diagnosed with MS. A pain who reappeared more vividly with every new symptom. A pain who was ignored too many times. By me, by her. As she wanted to protect me from every suffering. In my turn, I was hiding as best as I could any new symptom.

She will be remembered by all of us as the happiest, the most joyful and optimistic person! She is for sure the strongest woman, the strongest person I have ever met and

I am because of her.

All I have  now is to write about this, about her, about her pain, but also about the love we felt for each other. And the many things left unsaid.

Love,

Florența

Why #lifeisnotafight

When I started this blog, its name came natural. At first, I created  the blog hoping to reach other people facing similar issues (MS, Lyme, confusion, changes etc), and to avoid that others will feel alone, as I felt so many times. Maybe to find together some positive things that are happening in this chaos J

When I was diagnosed with Lyme, and I got to the Lyme Clinique in Germany, the doctors that I met there gave me a list of support websites, so that I knew “that I am not alone”. Full of hope, I was expecting to see there success stories, healing stories. Instead, after watching first two videos, I realized I only get depressed seeing the people, their diseases, in all their grandiosity, wheelchairs and so on.

Ok, it is real, but not something I wanted to see under antibiotics , when all my symptoms flared up, when I didn’t know if I would walk again.

So at that point, I decided to write my own success story. If on this whole Internet (at that point), I couldn’t find a story that would inspire me, I promised myself I would do it. That I would find in myself that last light of hope in the chaos of a progressive disease, and I will follow it, to see where it gets me.

From my diagnosis, in 2005,  when I didn’t ignored the disease, I fought with it. Every step I took while struggling, when I felt the lack of power in my leg, every effort to keep dancing when my legs didn’t help anymore, I thought this struggle would be what would make me a winner in this fight.

Nevertheless, the disease progressed, without considering my struggles, my ambitions. It progressed, in its own rhythm , slowly, constantly, until I started feeling that maybe, this is not my solution. Maybe there is something I’m not doing right.

And then I asked myself: “how about looking at it from another angle? What it would be like , instead of fighting someone, something that doesn’t exist (physically anyway, though I feel so present in my life anyway!), I would just make peace? I would just accept it as a part of my life?”

Helped by personal psychotherapy and reading a lot on my own, I started slowly changing things I once considered so much part of my life, part of me. I started thinking at things I do, of which I am very much attached, that aren’t even BAD things. And how would my life be if I changed them. If I just stopped doing them: to think in a certain way, things I did all my life…just because.

Maybe I was just taught to do them. Maybe they are not mine,

One example that comes to mind now is regarding my boyfriends J. My mom always said that I should find someone that would be very handy around the house, so that nothing would get broken, or at least would get fixed fast. I thought that ok… this is something I could change. It was never a bad think per se, and in theory, I agree that it would make life easier to have someone in the house to fix things (!!) , but is that enough? Is that something my happiness depends on? What would be like I just didn’t look for this, and instead, I would let things happen? ( I really am a lot happier now by just calling the mechanic when I need something fixing around the house! )

And so, step by step, I started making critical changes: changing perceptions, strong beliefs, that were not necessarily bad, were just not fit, and they interfered with my happiness.

Ok,I continued exercising but stopped dancing, continued living a healthy life, but with less self criticism and aggressivity towards myself, more relaxed and loving.

. 

Why do I think that a disease, life itself should not be considered a fight? Because I saw can never win this fight. Life and MS showed me that it can get worse in any moment.

Short while after my first symptoms, my dad died. Then, my high school friends just left my side. Suddenly , my mom got sick. In the meanwhile, MS was progressing . Things were getting worse. It can always get worse. We can hope, stay  positive, and when I saw that was just not enough…? Clearly, what I was doing, for me, it wasn’t working.

This approach of fight, of struggling, was not helping anymore. The moment I started doing these critical changes, switching from “the forever warrior” to a more spiritual person, who just decided to make peace with life and to accept these changes and the implicit lessons that MS gave, was the moment I started relaxing,

This doesn’t mean I found the magic MS cure, it doesn’t mean I didn’t go trough other hard moments. Only now it seemed easier. I am more relaxed, more careful with my body and my soul. In the same time, I learned how to be grateful for every good, and not so good thing that is happening, to find the positive side in almost everything, even in the darkest periods.

Since I embraced what is happening, other kind of people came in my life, new doors opened, new opportunities and knowledge.

This is how I deal with this. For others, the idea of fighter/fight, is working, and this is ok.

Me? I found other approach, and for me #lifeisnotafight is working.

Love,

Florenta